| Public consultations, public hearings, advocacy events, national and international forums. | Cancer
> Cancer : autre | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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]. | Neuromusculaire
> Dystrophie musculaire | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 5 000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Saignement
> Hémophilie | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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]. | Respiratoire
> Asthme et BPCO | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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]. | Cancer
> Cancer : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Cancer
> Cancer : autre | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Cancer
> Cancer : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Neuromusculaire
> Dystrophie musculaire | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Cancer
> Cancer : sang | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Respiratoire
> Respiratoire : la plupart des affections | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Déficience visuelle
> Déficience visuelle | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | VIH
> VIH | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Endocrinien
> Troubles de la croissance | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Respiratoire
> Asthme et BPCO | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Chronique
> Maladies chroniques en général | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Chronique
> Maladies chroniques en général | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Endocrinien
> Troubles de la croissance | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Contribuer aux soumissions d'autorisation de mise sur le marché | 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]. | Cancer
> Cancer : autre | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 5 000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Saignement
> Hémophilie | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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; | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Chronique
> Maladies chroniques en général | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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]. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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]. | Cancer
> Cancer : la plupart des types | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 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]. | Cancer
> Cancer : la plupart des types | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 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]. | Neuromusculaire
> Dystrophie musculaire | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 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. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Saignement
> Hémophilie | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 5 000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Endocrinien
> Troubles de la croissance | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Cancer
> Cancer : autre | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Cancer
> Cancer : gynécologique | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 1 000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodégénératif
> Alzheimer | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 5 000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Handicap
> Handicap : jeunes | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 1 000 | National | Regularly | 119047401612 |
| Public hearings. | Cancer
> Cancer : sein | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Cancer
> Cancer : sein | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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]. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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]. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 5 000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Chronique
> Maladies chroniques en général | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 5 000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Saignement
> Troubles hémorragiques : la plupart des types | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 1 000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Cancer
> Cancer : sein | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Rhumatismal
> Lupus | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Cancer
> Cancer : sang | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Endocrinien
> Troubles de la croissance | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 1 000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Saignement
> Hémophilie | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 1 000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Endocrinien
> Troubles de la croissance | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 5 000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Plaider pour des projets de loi et des droits de protection des patients | 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. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodégénératif
> Alzheimer | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 5 000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 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. | Saignement
> Hémophilie | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 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. | Rhumatismal
> Lupus | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | VIH
> VIH | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Santé générale
> Santé publique | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 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]. | Rare
> Maladies rares : la plupart des types | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Santé générale
> Santé publique | Plaidoyer pour la tarification et l'accessibilité financière
> Réduire les obstacles financiers pour les personnes à faibles revenus et les personnes vulnérables | 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. | Sang
> Drépanocytose | Plaidoyer pour la tarification et l'accessibilité financière
> Suivi et surveillance des prix des médicaments/pénuries de médicaments | 5 000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | VIH
> VIH | Plaidoyer pour la tarification et l'accessibilité financière
> Suivi et surveillance des prix des médicaments/pénuries de médicaments | 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. | Neurologique
> Sclérose en plaques | Plaidoyer pour la tarification et l'accessibilité financière
> Suivi et surveillance des prix des médicaments/pénuries de médicaments | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rare
> Maladies rares : la plupart des types | Plaidoyer pour la tarification et l'accessibilité financière
> Surveillance de la substitution de produits | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodégénératif
> Alzheimer | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 5 000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Déficience visuelle
> Déficience visuelle | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 1 000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromusculaire
> Amyotrophie spinale (SMA) | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 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]. | Neurologique
> Sclérose en plaques | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Santé générale
> Santé publique | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 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]. | Cancer
> Cancer : sein | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 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]. | Neurologique
> Sclérose en plaques | Plaidoyer pour la tarification et l'accessibilité financière
> Participer à des campagnes de sensibilisation | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologique
> Sclérose en plaques | Plaidoyer pour la tarification et l'accessibilité financière
> Participer à des campagnes de sensibilisation | 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. | Neuromusculaire
> Myasthénie grave | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Saignement
> Hémophilie | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rare
> Maladies rares : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Sang
> Drépanocytose | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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]. | Neurologique
> Sclérose en plaques | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Neurologique
> Sclérose en plaques | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Rare
> Maladies rares : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rare
> Maladies rares : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Rare
> Maladies rares : la plupart des types | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rare
> Maladies rares : la plupart des types | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 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. | Sang
> Drépanocytose | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 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. | Neuromusculaire
> Amyotrophie spinale (SMA) | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromusculaire
> Amyotrophie spinale (SMA) | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 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]. | Déficience visuelle
> Déficience visuelle | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 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. | Neurologique
> Sclérose en plaques | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Neuromusculaire
> Dystrophie musculaire | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Neuromusculaire
> Dystrophie musculaire | Contribution des patients fondée sur des données probantes
> Fournir des preuves du monde réel (RWE) aux agences réglementaires | 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. | Cancer
> Cancer : la plupart des types | Contribution des patients fondée sur des données probantes
> Exploiter les témoignages de patients et les récits d'expériences vécues | 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. | Endocrinien
> Troubles de la croissance | Contribution des patients fondée sur des données probantes
> Exploiter les témoignages de patients et les récits d'expériences vécues | 1 000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endocrinien
> Troubles de la croissance | Contribution des patients fondée sur des données probantes
> Mener des enquêtes/recherches pour générer des données | 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. | Neurologique
> Sclérose en plaques | Contribution des patients fondée sur des données probantes
> Traduire les preuves et les informations en contributions politiques | 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. | Endocrinien
> Troubles de la croissance | Contribution des patients fondée sur des données probantes
> Traduire les preuves et les informations en contributions politiques | 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. | Rare
> Maladies rares : la plupart des types | Diagnostic et livraison de médicaments
> Soutenir le dépistage et la détection précoce | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Rare
> Maladies rares : la plupart des types | Diagnostic et livraison de médicaments
> Soutenir le dépistage et la détection précoce | 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]. | Cancer
> Cancer : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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]. | Cancer
> Cancer : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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]. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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]. | Neuromusculaire
> Dystrophie musculaire | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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]. | Cancer
> Cancer : sang | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Cancer
> Cancer : sein | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Saignement
> Hémophilie | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Chronique
> Maladies chroniques en général | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Chronique
> Maladies chroniques en général | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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]. | VIH
> VIH | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 1 000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Cancer
> Cancer : sang | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 1 000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Saignement
> Troubles hémorragiques : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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]. | Cancer
> Cancer : sang | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Handicap
> Handicap : jeunes | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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]. | VIH
> VIH | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endocrinien
> Troubles de la croissance | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Endocrinien
> Troubles de la croissance | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | 1 000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Rare
> Maladies rares : métaboliques/lysosomales | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | 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]. | Déficience visuelle
> Déficience visuelle | Défense des droits des patients/amélioration de la qualité de vie
> Soutien dans les actions juridiques liées au traitement | 1 000 | National | Regularly | 119065385473 |
interactions
actions et plaidoyer
43 mentions
