Quellen:WHO, Our World in Data, World Bank
Übersetzungen sind hauptsächlich KI-generiert. Diese werden im Laufe der Zeit aktualisiert.
112 Befragte aus Patientengruppen aus Brasilien haben uns mitgeteilt, wie sie mit Arzneimittelzulassungsbehörden interagieren und zusammenarbeiten, um einen gleichberechtigten oder erschwinglicheren Zugang zu Medikamenten zu gewährleisten.
65 % der Befragten aus Brasilien vertreten 'Regelmäßig' oder 'Manchmal' Patienteninteressen gegenüber Arzneimittelzulassungsbehörden.
Gesamtzahl der erreichten Patienten = ~597.300
Patienten, die von jeder Patientengruppe erreicht wurden (64 Befragte).
ANNABRA [Associação Nanismo Brasil – Dwarfism Association of Brazil] — vertritt die Interessen von Menschen mit Kleinwuchs und ihren Familien in verschiedenen institutionellen Bereichen und öffentlichen Politikforen. Der Verband beteiligt sich an öffentlichen Konsultationen und beobachtet die Prozesse der Bewertung von Gesundheitstechnologien (Health Technology Assessment, HTA), die von den zuständigen Regulierungsbehörden durchgeführt werden und Empfehlungen zur Erstattung und zum Zugang zu Arzneimitteln betreffen.
Nationale Patientengruppe für Wachstumsstörungen
ABEM [Associação Brasileira de Esclerose Múltipla – Brasilianische Multiple-Sklerose-Gesellschaft] spielt eine aktive Rolle bei der institutionellen Vertretung von Menschen, die in Brasilien mit Multipler Sklerose leben, und engagiert sich bei Regulierungsbehörden, Regierungsstellen und politischen Foren zu Fragen des Behandlungszugangs. In dieser Funktion nimmt die Organisation an einer Reihe von Interessenvertretungs- und institutionellen Engagementaktivitäten teil, darunter…
Nationale Patientengruppe für neurologische Erkrankungen
ABEM [Associação Brasileira de Esclerose Múltipla – Brasilianische Multiple-Sklerose-Gesellschaft] übernimmt eine aktive Rolle bei der institutionellen Vertretung von Menschen, die in Brasilien mit Multipler Sklerose leben, und engagiert sich gegenüber Regulierungsbehörden, Regierungsstellen und politischen Foren zu Fragen des Behandlungszugangs. In dieser Funktion beteiligt sich die Organisation an einer Reihe von Interessenvertretungs- und institutionellen Engagementaktivitäten, darunter: • Erstellung von Fachstellungnahmen, formellen institutionellen Schreiben und offiziellen Positionspapieren zur Unterstützung eines gerechten Zugangs zu Behandlungen; Richtlinien.
Nationale Patientengruppe für neurologische Erkrankungen
Die Organisation setzt sich für die Rechte von Patienten ein, die an rheumatischen und Autoimmunerkrankungen leiden, und bietet Orientierung beim Zugang zu Behandlungen über das SUS [Sistema Único de Saúde – Einheitliches Gesundheitssystem], fördert den Dialog mit medizinischen Fachkräften und unterstützt Aufklärungsinitiativen sowie gesundheitspolitische Maßnahmen, die auf die Bedürfnisse der Patienten ausgerichtet sind.
A organização atua na defesa dos direitos dos pacientes com doenças reumáticas e autoimunes, promovendo orientação sobre acesso a tratamentos pelo SUS, diálogo com profissionais de saúde e participação em iniciativas de conscientização e políticas públicas voltadas aos pacientes.
Lokale Patientengruppe für rheumatische Erkrankungen
Die nachstehenden Prozentsätze verdeutlichen, wie die 73 Patientengruppen mit Regulierungsbehörden interagieren und für Patienteninteressen eintreten. Da Befragte in mehr als einem Bereich vertreten sein können, müssen die Prozentsätze nicht 100 % ergeben.
| Englischer Text | Therapiebereich | Kategorie | Erreichte Patienten | Geografische Reichweite | Regulatorisches Engagement | Befragte Person |
|---|---|---|---|---|---|---|
| Public consultations, public hearings, advocacy events, national and international forums. | Krebs > Krebs: andere | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 10.000 | National | Sometimes | 119017268057 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 5.000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuskulär > Muskeldystrophie | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 100 | Regional | Regularly | 119045134485 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], Ministry of Health, and others. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 5.000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Blutung > Hämophilie | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 1.000 | Regional | Regularly | 119052656211 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Atemwege > Asthma und COPD | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 10.000 | National | Regularly | 119073295628 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 10.000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blutung > Blutungserkrankungen: die meisten Typen | Regulatorische Partnerschaft > Zusammenarbeit mit Regulierungsbehörden | 100.000 | National | Regularly | 119083316815 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Krebs > Krebs: die meisten Arten | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100 | National | Sometimes | 115043432408 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Krebs > Krebs: andere | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Sometimes | 119025216545 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Krebs > Krebs: die meisten Arten | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | Local | Rarely | 119042830466 |
| Patient representation at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meeting held in December 2025. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119042861822 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuskulär > Muskeldystrophie | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100 | Regional | Regularly | 119045134485 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Krebs > Krebs: Blut | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119046062542 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], Ministry of Health, and others. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119046302524 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care, formal communications addressed directly to SECTICS [Secretaria de Ciência, Tecnologia, Inovação e do Complexo Econômico-Industrial da Saúde - Secretariat of Science, Technology, Innovation and the Health Economic-Industrial Complex] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100 | National | Regularly | 119051551373 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meetings, Health Committees and Councils, and the Blood and Blood Products Coordination. | Blutung > Blutungserkrankungen: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119054614432 |
| Participation in a rotating seat on CINITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], representing civil society in proceedings No. 23/2025 and No. 39/2025. | Atemwege > Atemwege: die meisten Erkrankungen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | Do not know | National | Sometimes | 119063788854 |
| We are active in discussions on the incorporation of therapies into the SUS [Sistema Único de Saúde — Brazil's Unified Health System], access to high-cost medicines. | Sehbehinderung > Sehbehinderung | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Regularly | 119065385473 |
| Response to requests submitted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | HIV > HIV | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | Local | Rarely | 119069127920 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in… monitoring and contributing to public consultations on the incorporation of medicines and health technologies. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119073066358 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • monitoring and contributing to public consultations on the incorporation of medicines and health technologies. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119073066358 |
| Vosoritide [for achondroplasia], a medication currently under evaluation by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Endokrin > Wachstumsstörungen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Regularly | 119073115381 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Atemwege > Asthma und COPD | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119073295628 |
| The organization participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organiSation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Regularly | 119073437945 |
| Activities range from participation in public consultations held by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and the ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. | Chronisch > Chronische Krankheiten im Allgemeinen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Regularly | 119074690098 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Chronisch > Chronische Krankheiten im Allgemeinen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Regularly | 119074690098 |
| We are continuously engaged in meetings with bodies such as Anvisa [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and the Ministry of Health [in Brazil], and we actively participate in public consultations conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | Regional | Sometimes | 119077444348 |
| ANNABRA — Associação Nanismo Brasil [Brazilian Dwarfism Association] — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. | Endokrin > Wachstumsstörungen | Regulatorische Partnerschaft > Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Beitrag zu Zulassungsanträgen leisten | 100 | Regional | No | 119078233817 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Krebs > Krebs: andere | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Sometimes | 119017268057 |
| Patient representation at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meeting held in December 2025. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 5.000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 100 | National | Regularly | 119051551373 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Blutung > Hämophilie | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 1.000 | Regional | Regularly | 119052656211 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meetings, Health Committees and Councils, and the Blood and Blood Products Coordination. | Blutung > Blutungserkrankungen: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Regularly | 119054614432 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • monitoring and contributing to public consultations on the incorporation of medicines and health technologies; • participating in public hearings and technical meetings with government bodies and institutions within the healthcare system; • institutional engagement with bodies such as the Ministry of Health, ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], particularly on matters relating to medicine access, clinical protocols, and dispensing policies; • engagement with the Public Prosecutor's Office, Public Defenders' Offices, and other social oversight bodies in cases of access barriers or medicine supply shortages; | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Regularly | 119073066358 |
| The organisation participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organisation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 100.000 | National | Regularly | 119073437945 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 100.000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Chronisch > Chronische Krankheiten im Allgemeinen | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 100.000 | National | Regularly | 119074690098 |
| We are continuously engaged in meetings with bodies such as Anvisa [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and the Ministry of Health [in Brazil], and we actively participate in public consultations conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Selten > Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft > Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 1.000 | Regional | Sometimes | 119077444348 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Krebs > Krebs: die meisten Arten | Regulatorische Partnerschaft > Mit anderen Gesundheitsfürsprechern | 5.000 | Local | Regularly | 119021005578 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Krebs > Krebs: die meisten Arten | Regulatorische Partnerschaft > Mit anderen Gesundheitsfürsprechern | 10.000 | Local | Rarely | 119042830466 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuskulär > Muskeldystrophie | Regulatorische Partnerschaft > Mit anderen Gesundheitsfürsprechern | 100 | Regional | Regularly | 119045134485 |
| The organisation participates actively in public hearings held by the ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency] and the National Congress, as well as in public consultations convened by the ANS and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and in the National Health Council (through the seat held by Biored Brasil, an organisation co-founded by AME [Amigos Múltiplos pela Esclerose -Multiple Friends for Sclerosis], among other organisations. | Neurologisch > Multiple Sklerose | Regulatorische Partnerschaft > Mit anderen Gesundheitsfürsprechern | 100.000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 5.000 | National | Regularly | 119045358161 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Blutung > Hämophilie | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 1.000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 5.000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 1.000 | National | Regularly | 119072208647 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 10.000 | National | Regularly | 119073066358 |
| The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Única de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs. | Rheumatisch > Rheumatische Erkrankungen: die meisten Arten | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 1.000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 100.000 | National | Regularly | 119074690047 |
| Through our presence in Brasília — engaging with health authorities and the National Congress in the development and defence of public health policies. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 5.000 | National | Regularly | 119074846445 |
| ANNABRA [Associação Nanismo Brasil -Brazil Dwarfism Association] advocates on behalf of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. | Endokrin > Wachstumsstörungen | Einfluss auf Politik und Gesetzgebung > Gesundheitspolitik und Gesetzgebung beeinflussen | 1.000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Krebs > Krebs: andere | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 10.000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Krebs > Krebs: gynäkologisch | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativ > Alzheimer | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 5.000 | National | Regularly | 119037286447 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 5.000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Behinderung > Behinderung: Jugendliche | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | National | Regularly | 119047401612 |
| Public hearings. | Krebs > Krebs: Brust | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | Local | Regularly | 119052436713 |
| The most recent public consultations on medicines related to the treatment of breast cancer attracted participation both from individuals — patients and caregivers — within our sphere of influence, as well as formal institutional engagement. | Krebs > Krebs: Brust | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | Regional | Regularly | 119063227678 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | Not specified | Local | Regularly | 119072244093 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... The participation in public hearings and technical meetings with governmental bodies and institutions within the health system. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 10.000 | National | Regularly | 119073066358 |
| The organisation participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organisation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 100.000 | National | Regularly | 119073437945 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 100.000 | National | Regularly | 119074690047 |
| Activities range from participation in public consultations held by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and the ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 100.000 | National | Regularly | 119074690047 |
| Through our presence in Brasília — engaging with health authorities and the National Congress in the development and defence of public health policies. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 5.000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Chronisch > Chronische Krankheiten im Allgemeinen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 5.000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Blutung > Blutungserkrankungen: die meisten Typen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Krebs > Krebs: Brust | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Rheumatisch > Lupus | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Krebs > Krebs: Blut | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 10.000 | National | Regularly | 119078150255 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. | Endokrin > Wachstumsstörungen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 5.000 | National | Regularly | 119078218520 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > An öffentlichen Anhörungen und Konsultationen teilnehmen | 1.000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 5.000 | National | Regularly | 119045358161 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 100 | National | Regularly | 119051551373 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Blutung > Hämophilie | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 1.000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 1.000 | National | Regularly | 119072208647 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 100.000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 5.000 | National | Regularly | 119074846445 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. | Endokrin > Wachstumsstörungen | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 1.000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 5.000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > Eintreten für Gesetze zum Patientenschutz und Patientenrechte | 1.000 | Regional | Regularly | 119077889187 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegenerativ > Alzheimer | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 5.000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 100 | National | Regularly | 119052447696 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Blutung > Hämophilie | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 1.000 | Regional | Regularly | 119052656211 |
| The organization participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organiSation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologisch > Multiple Sklerose | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 100.000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Selten > Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 5.000 | National | Regularly | 119074846445 |
| We have participated as speakers in public hearings on disease treatment and have been involved in the drafting of public health legislation. | Rheumatisch > Lupus | Einfluss auf Politik und Gesetzgebung > Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV > HIV | Preisgestaltung und Erschwinglichkeitsförderung > Für faire Medikamentenpreise eintreten | 10.000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allgemeine Gesundheit > Öffentliche Gesundheit | Preisgestaltung und Erschwinglichkeitsförderung > Für faire Medikamentenpreise eintreten | We do not communicate with patients directly | National | Rarely | 119073385147 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Selten > Seltene Krankheiten: die meisten Typen | Preisgestaltung und Erschwinglichkeitsförderung > Für faire Medikamentenpreise eintreten | 10.000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allgemeine Gesundheit > Öffentliche Gesundheit | Preisgestaltung und Erschwinglichkeitsförderung > Kostenhürden für einkommensschwache und vulnerable Personen abbauen | We do not communicate with patients directly | National | Rarely | 119073385147 |
| Position statement on the shortage of Hydroxyurea [chemotherapy to treat some blood cancers] within Brazil's public healthcare network for the treatment of these patients. | Blut > Sichelzellenerkrankung | Preisgestaltung und Erschwinglichkeitsförderung > Verfolgung und Überwachung von Arzneimittelpreisen/Arzneimittelengpässen | 5.000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV > HIV | Preisgestaltung und Erschwinglichkeitsförderung > Verfolgung und Überwachung von Arzneimittelpreisen/Arzneimittelengpässen | 10.000 | Local | Sometimes | 119072634823 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in collaboration with the Public Prosecutor's Office, Public Defenders' Offices, and other social oversight bodies in cases of access difficulties or medicine supply shortages. | Neurologisch > Multiple Sklerose | Preisgestaltung und Erschwinglichkeitsförderung > Verfolgung und Überwachung von Arzneimittelpreisen/Arzneimittelengpässen | 10.000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Selten > Seltene Krankheiten: die meisten Typen | Preisgestaltung und Erschwinglichkeitsförderung > Produktsubstitution überwachen | 10.000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativ > Alzheimer | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 5.000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Sehbehinderung > Sehbehinderung | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 1.000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 100 | Regional | Regularly | 119071788857 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologisch > Multiple Sklerose | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allgemeine Gesundheit > Öffentliche Gesundheit | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | We do not communicate with patients directly | National | Rarely | 119073385147 |
| We run campaigns advocating for the inclusion of medicines in the SUS [Sistema Único de Saúde – Unified Health System]. | Krebs > Krebs: Brust | Preisgestaltung und Erschwinglichkeitsförderung > Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 100 | Local | Sometimes | 119078637202 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologisch > Multiple Sklerose | Preisgestaltung und Erschwinglichkeitsförderung > Durchführung von Sensibilisierungskampagnen | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologisch > Multiple Sklerose | Preisgestaltung und Erschwinglichkeitsförderung > Durchführung von Sensibilisierungskampagnen | 1.000 | Regional | Regularly | 119077889187 |
| Not necessarily with respect to pricing; however, when required, we engage with public authorities to ensure that patients receive the medication prescribed by their physician, regardless of whether it is low- or high-cost. | Neuromuskulär > Myasthenia gravis | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 1.000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Blutung > Hämophilie | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Selten > Seltene Krankheiten: die meisten Typen | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 5.000 | National | Regularly | 119055145819 |
| Position statement on the shortage of Hydroxyurea [chemotherapy to treat some blood cancers] within Brazil's public healthcare network for the treatment of these patients. | Blut > Sichelzellenerkrankung | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 5.000 | National | Sometimes | 119068055140 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologisch > Multiple Sklerose | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | Not specified | Local | Regularly | 119072244093 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • preparation of technical notes, formal institutional correspondence, and official position statements in support of equitable access to treatments; policies. | Neurologisch > Multiple Sklerose | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 10.000 | National | Regularly | 119073066358 |
| The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Única de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs. | Rheumatisch > Rheumatische Erkrankungen: die meisten Arten | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 1.000 | Local | Sometimes | 119074685227 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Selten > Seltene Krankheiten: die meisten Typen | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 10.000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Selten > Seltene Krankheiten: die meisten Typen | Verbesserung der Zugangswege > Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 10.000 | National | Rarely | 119078192576 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Selten > Seltene Krankheiten: die meisten Typen | Verbesserung der Zugangswege > Ungleichheiten beim Zugang und bei der Verwaltung beseitigen | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Selten > Seltene Krankheiten: die meisten Typen | Verbesserung der Zugangswege > Ungleichheiten beim Zugang und bei der Verwaltung beseitigen | 100 | National | Regularly | 119052447696 |
| Position statement on the shortage of Hydroxyurea [chemotherapy to treat some blood cancers] within Brazil's public healthcare network for the treatment of these patients. | Blut > Sichelzellenerkrankung | Verbesserung der Zugangswege > Ungleichheiten beim Zugang und bei der Verwaltung beseitigen | 5.000 | National | Regularly | 119069254783 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Verbesserung der Zugangswege > Verbesserung des Zugangs zu seltenen/extrem seltenen Therapien | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulär > Spinale Muskelatrophie (SMA) | Verbesserung der Zugangswege > Verbesserung des Zugangs zu seltenen/extrem seltenen Therapien | 100 | National | Regularly | 119051551373 |
| We are active in discussions on the incorporation of therapies into the SUS (Sistema Único de Saúde — Brazil's Unified Health System), access to high-cost medicines, participation in ATS [Avaliação de Tecnologias em Saúde – Health Technology Assessment] deliberations, and the judicialization of rare disease treatment access [the growing phenomenon of patients and advocacy groups turning to the courts to mandate state or private insurers to cover treatment costs]. | Sehbehinderung > Sehbehinderung | Verbesserung der Zugangswege > Verbesserung des Zugangs zu seltenen/extrem seltenen Therapien | 1.000 | National | Regularly | 119065385473 |
| Although ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] does not participate directly in medicine pricing decisions — which in Brazil are conducted by CMED [Câmara de Regulação do Mercado de Medicamentos – Chamber for Medicines Market Regulation] — the organisation contributes to the public and institutional debate on treatment access, availability, and sustainability, bringing the perspective of people living with multiple sclerosis and their families. | Neurologisch > Multiple Sklerose | Evidenzbasierter Patientenbeitrag > Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 10.000 | National | Regularly | 119073066358 |
| Advocacy meetings on behalf of therapies, presenting an up-to-date overview of the Brazilian landscape and real-world evidence. | Neuromuskulär > Muskeldystrophie | Evidenzbasierter Patientenbeitrag > Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 1.000 | National | Regularly | 119077508858 |
| Advocacy meetings on behalf of therapies, presenting an up-to-date overview of the Brazilian landscape and real-world evidence. | Neuromuskulär > Muskeldystrophie | Evidenzbasierter Patientenbeitrag > Bereitstellung von Real-World-Evidence (RWE) für Regulierungsbehörden | 1.000 | National | Regularly | 119077508858 |
| We contribute to the public consultations conducted by CONITEC (Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde — Brazil's national health technology assessment body) in the oncology area, doing so through FEMAMA (Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama). We frequently register patients to provide their firsthand experiences with specific treatments or new health technologies under review. | Krebs > Krebs: die meisten Arten | Evidenzbasierter Patientenbeitrag > Nutzen Sie Patientengeschichten und Erfahrungsberichte aus erster Hand | 10.000 | Local | Rarely | 119042830466 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. This work aims to strengthen civil society participation in decision-making processes and to advance broader understanding of the specific needs of individuals living with dwarfism in Brazil. | Endokrin > Wachstumsstörungen | Evidenzbasierter Patientenbeitrag > Nutzen Sie Patientengeschichten und Erfahrungsberichte aus erster Hand | 1.000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokrin > Wachstumsstörungen | Evidenzbasierter Patientenbeitrag > Umfragen/Forschungen durchführen, um Daten zu generieren | 1.000 | National | Regularly | 119078198577 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... drafting technical position papers, formal institutional correspondence, and official statements in support of equitable access to treatments. | Neurologisch > Multiple Sklerose | Evidenzbasierter Patientenbeitrag > Erkenntnisse und Belege in politische Beiträge umwandeln | 10.000 | National | Regularly | 119073066358 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) —maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. This work aims to strengthen civil society participation in decision-making processes and to advance broader understanding of the specific needs of individuals living with dwarfism in Brazil. | Endokrin > Wachstumsstörungen | Evidenzbasierter Patientenbeitrag > Erkenntnisse und Belege in politische Beiträge umwandeln | 1.000 | National | Regularly | 119078211127 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Selten > Seltene Krankheiten: die meisten Typen | Diagnose und Medikamentenlieferung > Screening und Früherkennung unterstützen | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Selten > Seltene Krankheiten: die meisten Typen | Diagnose und Medikamentenlieferung > Screening und Früherkennung unterstützen | 100 | National | Regularly | 119052447696 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Krebs > Krebs: die meisten Arten | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100 | National | Sometimes | 115043432408 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Krebs > Krebs: die meisten Arten | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 5.000 | Local | Regularly | 119021005578 |
| Ministry of Health, ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], CNS [Conselho Nacional de Saúde – National Health Council], Conass [Conselho Nacional de Secretários de Saúde – National Council of State Health Secretaries], Canasems [Conselho Nacional de Secretarias Municipais de Saúde – National Council of Municipal Health Secretaries]. | Endokrin > Diabetes (Typ 1 und Typ 2) | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | Regional | Regularly | 119044579058 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuskulär > Muskeldystrophie | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Selten > Seltene Krankheiten: die meisten Typen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 5.000 | National | Regularly | 119045358161 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Krebs > Krebs: Blut | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Krebs > Krebs: Brust | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Blutung > Hämophilie | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 1.000 | Regional | Regularly | 119052656211 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurologisch > Multiple Sklerose | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | National | Regularly | 119073066358 |
| The organization participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organiSation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologisch > Multiple Sklerose | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100.000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Chronisch > Chronische Krankheiten im Allgemeinen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100.000 | National | Regularly | 119074690098 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Chronisch > Chronische Krankheiten im Allgemeinen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100.000 | National | Regularly | 119074690098 |
| We hold seats on the ONGs [Organizações Não Governamentais – Non-Governmental Organisations] AIDS [Acquired immunodeficiency syndrome] Forum of the State of São Paulo, the Municipal Health Secretariat of São Paulo–SP [State of São Paulo], the CTA [Centro de Testagem e Aconselhamento - Testing and Counselling Centre]-Pirituba Management Council, the Paulistano Movement in the Fight Against AIDS, and the Human Rights Council of the State Secretariat of Justice – SP[State of São Paulo]. | HIV > HIV | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 1.000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Krebs > Krebs: Blut | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | National | Regularly | 119078150255 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Selten > Seltene Krankheiten: die meisten Typen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 1.000 | National | Regularly | 119078307187 |
| We hold seats on the CNS [Conselho Nacional de Saúde – National Health Council] and serve on the coordinating body of the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Commission on Science, Technology and Pharmaceutical Assistance], as well as other commissions. | Selten > Seltene Krankheiten: die meisten Typen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 1.000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Selten > Seltene Krankheiten: die meisten Typen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blutung > Blutungserkrankungen: die meisten Typen | Institutionelle Governance > Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100.000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Rheumatisch > Rheumatische Erkrankungen: die meisten Arten | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 100 | Local | Sometimes | 119014521397 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Krebs > Krebs: Blut | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 10.000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Behinderung > Behinderung: Jugendliche | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 1.000 | National | Regularly | 119047401612 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • collaboration with other civil society organisations, patient networks, and subject-matter experts to strengthen the collective representation of the interests of people living with demyelinating diseases. | Neurologisch > Multiple Sklerose | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 10.000 | National | Regularly | 119073066358 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged … in the coordination with other civil society organisations, patient networks, and subject-matter experts to strengthen the collective representation of the interests of people living with demyelinating diseases. | Neurologisch > Multiple Sklerose | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 10.000 | National | Regularly | 119073066358 |
| We hold seats on the ONGs [Organizações Não Governamentais – Non-Governmental Organisations] AIDS [Acquired immunodeficiency syndrome] Forum of the State of São Paulo, the Municipal Health Secretariat of São Paulo–SP [State of São Paulo], the CTA [Centro de Testagem e Aconselhamento - Testing and Counselling Centre]-Pirituba Management Council, the Paulistano Movement in the Fight Against AIDS, and the Human Rights Council of the State Secretariat of Justice – SP[State of São Paulo]. | HIV > HIV | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 1.000 | National | Regularly | 119074698753 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Selten > Seltene Krankheiten: die meisten Typen | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 10.000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokrin > Wachstumsstörungen | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 1.000 | National | Regularly | 119078198577 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. This work aims to strengthen civil society participation in decision-making processes and to advance broader understanding of the specific needs of individuals living with dwarfism in Brazil. | Endokrin > Wachstumsstörungen | Institutionelle Governance > Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 1.000 | National | Regularly | 119078211127 |
| The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Única de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs. | Rheumatisch > Rheumatische Erkrankungen: die meisten Arten | Patientenrechte wahren/Lebensqualität verbessern > Schutz/Verbesserung der Patientenerfahrung | 1.000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Selten > Seltene Krankheiten: Metabolisch/Lysosomal | Patientenrechte wahren/Lebensqualität verbessern > Schutz/Verbesserung der Patientenerfahrung | 1.000 | National | Sometimes | 119075128442 |
| We are active in discussions on the incorporation of therapies into the SUS (Sistema Único de Saúde — Brazil's Unified Health System), access to high-cost medicines, participation in ATS [Avaliação de Tecnologias em Saúde – Health Technology Assessment] deliberations, and the judicialization of rare disease treatment access [the growing phenomenon of patients and advocacy groups turning to the courts to mandate state or private insurers to cover treatment costs]. | Sehbehinderung > Sehbehinderung | Patientenrechte wahren/Lebensqualität verbessern > Unterstützung bei behandlungsbezogenen rechtlichen Maßnahmen | 1.000 | National | Regularly | 119065385473 |
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