| Public consultations, public hearings, advocacy events, national and international forums. | Kanker
> Kanker: overig | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Werken met regelgevende instanties | 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]. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Werken met regelgevende instanties | 5.000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Bloeding
> Hemofilie | Regelgevend partnerschap
> Werken met regelgevende instanties | 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]. | Respiratoir
> Astma en COPD | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Werken met regelgevende instanties | 10.000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Werken met regelgevende instanties | 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]. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Kanker
> Kanker: overig | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Respiratoir
> Ademhaling: de meeste aandoeningen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Visuele beperking
> Visuele beperking | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 sclerose | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 sclerose | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Endocrien
> Groeistoornissen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Respiratoir
> Astma en COPD | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 sclerose | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 ziekten in het algemeen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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 ziekten in het algemeen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Endocrien
> Groeistoornissen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Bijdragen aan indieningen voor Handelsvergunningen | 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]. | Kanker
> Kanker: overig | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 5.000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Bloeding
> Hemofilie | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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 sclerose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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 sclerose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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 sclerose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 100.000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Chronisch
> Chronische ziekten in het algemeen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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]. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Met andere zorgadvocaten | 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]. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Met andere zorgadvocaten | 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]. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Met andere zorgadvocaten | 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 sclerose | Regelgevend partnerschap
> Met andere zorgadvocaten | 100.000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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. | Bloeding
> Hemofilie | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 5.000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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 sclerose | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologisch
> Multiple sclerose | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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. | Endocrien
> Groeistoornissen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Kanker
> Kanker: overig | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 10.000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Kanker
> Kanker: gynaecologisch | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 1.000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneratief
> Alzheimer | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 5.000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Handicap
> Handicap: jongeren | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 1.000 | National | Regularly | 119047401612 |
| Public hearings. | Kanker
> Kanker: borst | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Kanker
> Kanker: borst | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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 sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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 sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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 sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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 sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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 sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 5.000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Chronisch
> Chronische ziekten in het algemeen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 5.000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Bloeding
> Bloedingsstoornissen: de meeste typen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 1.000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Kanker
> Kanker: borst | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumatisch
> Lupus | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Kanker
> Kanker: bloed | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Endocrien
> Groeistoornissen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 1.000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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. | Bloeding
> Hemofilie | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 1.000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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 sclerose | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 100.000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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. | Endocrien
> Groeistoornissen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 5.000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologisch
> Multiple sclerose | Beleid en wetgeving beïnvloeden
> Pleit voor wetsvoorstellen en rechten ter bescherming van patiënten | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegeneratief
> Alzheimer | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 5.000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 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. | Bloeding
> Hemofilie | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 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 sclerose | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100.000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 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. | Reumatisch
> Lupus | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 10.000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Algemene gezondheid
> Volksgezondheid | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 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]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 10.000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Algemene gezondheid
> Volksgezondheid | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pak kostendrempels aan voor mensen met een laag inkomen en kwetsbare mensen | 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. | Bloed
> Sikkelcelziekte | Pleitbezorging voor prijsstelling en betaalbaarheid
> Tracking en monitoring van geneesmiddelenprijzen/geneesmiddelentekorten | 5.000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Pleitbezorging voor prijsstelling en betaalbaarheid
> Tracking en monitoring van geneesmiddelenprijzen/geneesmiddelentekorten | 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 sclerose | Pleitbezorging voor prijsstelling en betaalbaarheid
> Tracking en monitoring van geneesmiddelenprijzen/geneesmiddelentekorten | 10.000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Productvervanging bewaken | 10.000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneratief
> Alzheimer | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 5.000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Visuele beperking
> Visuele beperking | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 1.000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 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 sclerose | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Algemene gezondheid
> Volksgezondheid | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 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]. | Kanker
> Kanker: borst | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 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 sclerose | Pleitbezorging voor prijsstelling en betaalbaarheid
> Deelnemen aan bewustmakingscampagnes | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologisch
> Multiple sclerose | Pleitbezorging voor prijsstelling en betaalbaarheid
> Deelnemen aan bewustmakingscampagnes | 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. | Neuromusculair
> Myasthenia gravis | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Bloeding
> Hemofilie | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Bloed
> Sikkelcelziekte | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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 sclerose | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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 sclerose | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 10.000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 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. | Bloed
> Sikkelcelziekte | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 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. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 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]. | Visuele beperking
> Visuele beperking | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 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 sclerose | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Neuromusculair
> Spierdystrofie | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Neuromusculair
> Spierdystrofie | Op bewijs gebaseerde patiëntinbreng
> Verstrek Real-World Evidence (RWE) aan regelgevende instanties | 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. | Kanker
> Kanker: de meeste soorten | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 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. | Endocrien
> Groeistoornissen | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 1.000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endocrien
> Groeistoornissen | Op bewijs gebaseerde patiëntinbreng
> Enquêtes/onderzoek uitvoeren om gegevens te genereren | 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 sclerose | Op bewijs gebaseerde patiëntinbreng
> Vertaal bewijs en inzichten naar beleidsinput | 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. | Endocrien
> Groeistoornissen | Op bewijs gebaseerde patiëntinbreng
> Vertaal bewijs en inzichten naar beleidsinput | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Diagnose en medicijnbezorging
> Ondersteuning bij screening en vroege opsporing | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Diagnose en medicijnbezorging
> Ondersteuning bij screening en vroege opsporing | 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]. | Kanker
> Kanker: de meeste soorten | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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]. | Kanker
> Kanker: de meeste soorten | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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]. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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]. | Neuromusculair
> Spierdystrofie | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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]. | Kanker
> Kanker: bloed | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 10.000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Kanker
> Kanker: borst | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Bloeding
> Hemofilie | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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 sclerose | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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 sclerose | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100.000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Chronisch
> Chronische ziekten in het algemeen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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 ziekten in het algemeen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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 | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 1.000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Kanker
> Kanker: bloed | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 1.000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 10.000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Bloeding
> Bloedingsstoornissen: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100.000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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]. | Kanker
> Kanker: bloed | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 10.000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Handicap
> Handicap: jongeren | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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 sclerose | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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 sclerose | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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 | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 10.000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endocrien
> Groeistoornissen | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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. | Endocrien
> Groeistoornissen | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | 1.000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | 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]. | Visuele beperking
> Visuele beperking | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> Ondersteuning bij behandelingsgerelateerde juridische acties | 1.000 | National | Regularly | 119065385473 |
interacties
acties & belangenbehartiging
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