| Public consultations, public hearings, advocacy events, national and international forums. | Câncer
> Câncer: outro | Parceria regulatória
> Trabalhando com órgãos reguladores | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Trabalhando com órgãos reguladores | 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]. | Neuromuscular
> Distrofia muscular | Parceria regulatória
> Trabalhando com órgãos reguladores | 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. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Trabalhando com órgãos reguladores | 5.000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Sangramento
> Hemofilia | Parceria regulatória
> Trabalhando com órgãos reguladores | 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]. | Respiratório
> Asma e DPOC | Parceria regulatória
> Trabalhando com órgãos reguladores | 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. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Trabalhando com órgãos reguladores | 10.000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Parceria regulatória
> Trabalhando com órgãos reguladores | 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]. | Câncer
> Câncer: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Câncer
> Câncer: outro | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 10.000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Câncer
> Câncer: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Neuromuscular
> Distrofia muscular | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Câncer
> Câncer: sangue | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Respiratório
> Respiratório: a maioria das condições | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Deficiência visual
> Deficiência visual | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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 | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Endócrino
> Distúrbios de crescimento | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Respiratório
> Asma e DPOC | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Crônico
> Doenças crônicas em geral | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Crônico
> Doenças crônicas em geral | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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]. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 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. | Endócrino
> Distúrbios de crescimento | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 1.000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Contribuir para submissões de Autorização de Comercialização | 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]. | Câncer
> Câncer: outro | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 5.000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Atrofia muscular espinhal (AME) | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Sangramento
> Hemofilia | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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; | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Crônico
> Doenças crônicas em geral | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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]. | Raro
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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]. | Câncer
> Câncer: a maioria dos tipos | Parceria regulatória
> Com outros defensores da saúde | 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]. | Câncer
> Câncer: a maioria dos tipos | Parceria regulatória
> Com outros defensores da saúde | 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]. | Neuromuscular
> Distrofia muscular | Parceria regulatória
> Com outros defensores da saúde | 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. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Com outros defensores da saúde | 100.000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Sangramento
> Hemofilia | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 5.000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Reumático
> Doenças reumáticas: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Endócrino
> Distúrbios de crescimento | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Câncer
> Câncer: outro | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 10.000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Câncer
> Câncer: ginecológico | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 1.000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativa
> Alzheimer's | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Deficiência
> Deficiência: jovens | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 1.000 | National | Regularly | 119047401612 |
| Public hearings. | Câncer
> Câncer: mama | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Câncer
> Câncer: mama | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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]. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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]. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Crônico
> Doenças crônicas em geral | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 1.000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Câncer
> Câncer: mama | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumático
> Lúpus | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Câncer
> Câncer: sangue | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Endócrino
> Distúrbios de crescimento | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 1.000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 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. | Sangramento
> Hemofilia | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 1.000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 100.000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 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. | Endócrino
> Distúrbios de crescimento | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 5.000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Defender projetos de lei e direitos de proteção ao paciente | 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. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegenerativa
> Alzheimer's | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 5.000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 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. | Sangramento
> Hemofilia | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 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. | Neurológico
> Esclerose múltipla | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 100.000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Raro
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 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. | Reumático
> Lúpus | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 10.000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Saúde geral
> Saúde pública | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 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]. | Raro
> Doenças raras: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 10.000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Saúde geral
> Saúde pública | Defesa de preços e acessibilidade financeira
> Abordar barreiras de custo para pessoas de baixa renda e vulneráveis | 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. | Sangue
> Doença falciforme | Defesa de preços e acessibilidade financeira
> Rastreamento e monitoramento de preços de medicamentos/escassez de medicamentos | 5.000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Defesa de preços e acessibilidade financeira
> Rastreamento e monitoramento de preços de medicamentos/escassez de medicamentos | 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. | Neurológico
> Esclerose múltipla | Defesa de preços e acessibilidade financeira
> Rastreamento e monitoramento de preços de medicamentos/escassez de medicamentos | 10.000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Raro
> Doenças raras: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Monitorando substituição de produto | 10.000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativa
> Alzheimer's | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 5.000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Deficiência visual
> Deficiência visual | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 1.000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromuscular
> Atrofia muscular espinhal (AME) | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 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]. | Neurológico
> Esclerose múltipla | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Saúde geral
> Saúde pública | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 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]. | Câncer
> Câncer: mama | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 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]. | Neurológico
> Esclerose múltipla | Defesa de preços e acessibilidade financeira
> Participando de campanhas de conscientização | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurológico
> Esclerose múltipla | Defesa de preços e acessibilidade financeira
> Participando de campanhas de conscientização | 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. | Neuromuscular
> Miastenia gravis | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1.000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Sangramento
> Hemofilia | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Raro
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Sangue
> Doença falciforme | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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]. | Neurológico
> Esclerose múltipla | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Neurológico
> Esclerose múltipla | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Reumático
> Doenças reumáticas: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Raro
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 10.000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Raro
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Raro
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Abordar disparidades no acesso e na gestão | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Raro
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Abordar disparidades no acesso e na gestão | 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. | Sangue
> Doença falciforme | Melhorando os caminhos de acesso
> Abordar disparidades no acesso e na gestão | 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. | Neuromuscular
> Atrofia muscular espinhal (AME) | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Atrofia muscular espinhal (AME) | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | 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]. | Deficiência visual
> Deficiência visual | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | 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. | Neurológico
> Esclerose múltipla | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Neuromuscular
> Distrofia muscular | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Neuromuscular
> Distrofia muscular | Contribuição do paciente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências regulatórias | 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. | Câncer
> Câncer: a maioria dos tipos | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 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. | Endócrino
> Distúrbios de crescimento | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 1.000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endócrino
> Distúrbios de crescimento | Contribuição do paciente baseada em evidências
> Realizar pesquisas/investigações para gerar dados | 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. | Neurológico
> Esclerose múltipla | Contribuição do paciente baseada em evidências
> Traduza evidências e insights em subsídios para políticas | 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. | Endócrino
> Distúrbios de crescimento | Contribuição do paciente baseada em evidências
> Traduza evidências e insights em subsídios para políticas | 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. | Raro
> Doenças raras: maioria dos tipos | Diagnóstico e entrega de medicamentos
> Apoiar triagem e detecção precoce | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Raro
> Doenças raras: maioria dos tipos | Diagnóstico e entrega de medicamentos
> Apoiar triagem e detecção precoce | 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]. | Câncer
> Câncer: a maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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]. | Câncer
> Câncer: a maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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]. | Endócrino
> Diabetes (tipos 1 e 2) | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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]. | Neuromuscular
> Distrofia muscular | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Doenças raras: maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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]. | Câncer
> Câncer: sangue | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 10.000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Câncer
> Câncer: mama | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Sangramento
> Hemofilia | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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. | Neurológico
> Esclerose múltipla | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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. | Neurológico
> Esclerose múltipla | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 100.000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Crônico
> Doenças crônicas em geral | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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. | Crônico
> Doenças crônicas em geral | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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 | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 1.000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Câncer
> Câncer: sangue | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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. | Raro
> Doenças raras: maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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. | Raro
> Doenças raras: maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 1.000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Raro
> Doenças raras: maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 10.000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 100.000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumático
> Doenças reumáticas: maioria dos tipos | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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]. | Câncer
> Câncer: sangue | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 10.000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Deficiência
> Deficiência: jovens | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Neurológico
> Esclerose múltipla | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Neurológico
> Esclerose múltipla | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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 | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Raro
> Doenças raras: maioria dos tipos | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 10.000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endócrino
> Distúrbios de crescimento | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Endócrino
> Distúrbios de crescimento | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Reumático
> Doenças reumáticas: maioria dos tipos | Defendendo os direitos dos pacientes/melhorando a qualidade de vida
> Protegendo/melhorando a experiência do paciente | 1.000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Raro
> Doenças raras: metabólicas/lisossomais | Defendendo os direitos dos pacientes/melhorando a qualidade de vida
> Protegendo/melhorando a experiência do paciente | 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]. | Deficiência visual
> Deficiência visual | Defendendo os direitos dos pacientes/melhorando a qualidade de vida
> Suporte em ações legais relacionadas ao tratamento | 1.000 | National | Regularly | 119065385473 |
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