| Public consultations, public hearings, advocacy events, national and international forums. | Cancro
> Cancro: outro | Parceria regulatória
> A trabalhar com organismos 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
> A trabalhar com organismos reguladores | 5000 | 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
> A trabalhar com organismos 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: a maioria dos tipos | Parceria regulatória
> A trabalhar com organismos reguladores | 5000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Sangramento
> Hemofilia | Parceria regulatória
> A trabalhar com organismos reguladores | 1000 | 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
> A trabalhar com organismos 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: a maioria dos tipos | Parceria regulatória
> A trabalhar com organismos reguladores | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangramento
> Perturbações hemorrágicas: a maioria dos tipos | Parceria regulatória
> A trabalhar com organismos 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]. | Cancro
> Cancro: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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]. | Cancro
> Cancro: outro | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Raro
> Doenças raras: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 1000 | 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]. | Cancro
> Cancro: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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 Tecnologias de Saúde (ATS) e de reembolso | 5000 | 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 Tecnologias de Saúde (ATS) e de reembolso | 5000 | 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 Tecnologias de Saúde (ATS) e de 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]. | Cancro
> Cancro: sangue | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 5000 | 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 Tecnologias de Saúde (ATS) e de 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
> Perturbações hemorrágicas: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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 Tecnologias de Saúde (ATS) e de 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 Tecnologias de Saúde (ATS) e de reembolso | 1000 | 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 Tecnologias de Saúde (ATS) e de reembolso | 1000 | 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 Tecnologias de Saúde (ATS) e de 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 Tecnologias de Saúde (ATS) e de 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
> Perturbações do crescimento | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 1000 | 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 Tecnologias de Saúde (ATS) e de 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 Tecnologias de Saúde (ATS) e de 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]. | Crónico
> Doenças crónicas em geral | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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. | Crónico
> Doenças crónicas em geral | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de 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: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 1000 | 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
> Perturbações do crescimento | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 1000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Raro
> Doenças raras: a maioria dos tipos | Parceria regulatória
> Contribuir para submissões de Autorização de Introdução no Mercado | 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]. | Cancro
> Cancro: outro | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/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 decisores políticos/reguladores | 5000 | 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 decisores políticos/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 decisores políticos/reguladores | 1000 | 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
> Perturbações hemorrágicas: a maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/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 decisores políticos/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 decisores políticos/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 decisores políticos/reguladores | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Crónico
> Doenças crónicas em geral | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/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: a maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 1000 | 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]. | Cancro
> Cancro: a maioria dos tipos | Parceria regulatória
> Com outros defensores de saúde | 5000 | 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]. | Cancro
> Cancro: a maioria dos tipos | Parceria regulatória
> Com outros defensores de 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 de 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 de 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: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 5000 | 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 | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 5000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | 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 | Impacto nas políticas e legislação
> Influenciar a política e legislação 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: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurológico
> Esclerose múltipla | Impacto nas políticas e legislação
> Influenciar a política e legislação 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: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 5000 | 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
> Perturbações do crescimento | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Cancro
> Cancro: outro | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Cancro
> Cancro: ginecológico | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativa
> Alzheimer | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | 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) | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Deficiência
> Deficiência: jovens | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | National | Regularly | 119047401612 |
| Public hearings. | Cancro
> Cancro: mama | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | 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. | Cancro
> Cancro: mama | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | 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 | Impacto nas políticas e legislação
> Participar em 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 | Impacto nas políticas e legislação
> Participar em 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 | Impacto nas políticas e legislação
> Participar em 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 | Impacto nas políticas e legislação
> Participar em 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 | Impacto nas políticas e legislação
> Participar em 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: a maioria dos tipos | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Crónico
> Doenças crónicas em geral | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Sangramento
> Perturbações hemorrágicas: a maioria dos tipos | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Cancro
> Cancro: mama | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumático
> Lúpus | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Cancro
> Cancro: sangue | Impacto nas políticas e legislação
> Participar em 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
> Perturbações do crescimento | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | 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: a maioria dos tipos | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | 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: a maioria dos tipos | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 1000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 5000 | 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) | Impacto nas 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 | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 1000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 1000 | 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 | Impacto nas 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: a maioria dos tipos | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 5000 | 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
> Perturbações do crescimento | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 1000 | 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: a maioria dos tipos | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 5000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurológico
> Esclerose múltipla | Impacto nas políticas e legislação
> Defender projetos de lei e direitos de proteção dos doentes | 1000 | 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: a maioria dos tipos | Impacto nas 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 | Impacto nas políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 5000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas 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 | Impacto nas políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 1000 | 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 | Impacto nas 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: a maioria dos tipos | Impacto nas políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 5000 | 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 | Impacto nas 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
> Defender 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
> Defender 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: a maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defender 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 as barreiras de custo para pessoas de baixo rendimento 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 das células falciformes | Defesa de preços e acessibilidade financeira
> Monitorização e acompanhamento de preços de medicamentos/escassez de medicamentos | 5000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Defesa de preços e acessibilidade financeira
> Monitorização e acompanhamento 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
> Monitorização e acompanhamento 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: a maioria dos tipos | Defesa de preços e acessibilidade financeira
> Monitorização de 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 | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 5000 | 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
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 1000 | 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
> Defender 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
> Defender 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
> Defender 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]. | Cancro
> Cancro: mama | Defesa de preços e acessibilidade financeira
> Defender 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
> Participar em campanhas de sensibilização | 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
> Participar em campanhas de sensibilização | 1000 | 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 | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Sangramento
> Hemofilia | Melhorar 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: a maioria dos tipos | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5000 | 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 das células falciformes | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5000 | 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 | Melhorar 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 | Melhorar 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: a maioria dos tipos | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1000 | 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: a maioria dos tipos | Melhorar 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: a maioria dos tipos | Melhorar 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: a maioria dos tipos | Melhorar os caminhos de acesso
> Abordar disparidades no acesso e 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: a maioria dos tipos | Melhorar os caminhos de acesso
> Abordar disparidades no acesso e 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 das células falciformes | Melhorar os caminhos de acesso
> Abordar disparidades no acesso e gestão | 5000 | 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) | Melhorar os caminhos de acesso
> Melhorar o acesso a terapias raras/ultra-raras | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Atrofia muscular espinhal (AME) | Melhorar os caminhos de acesso
> Melhorar o acesso a terapias raras/ultra-raras | 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 | Melhorar os caminhos de acesso
> Melhorar o acesso a terapias raras/ultra-raras | 1000 | 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 doente baseada em evidências
> Utilize os insights dos pacientes para informar 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 doente baseada em evidências
> Utilize os insights dos pacientes para informar decisões | 1000 | 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 doente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências reguladoras | 1000 | 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. | Cancro
> Cancro: a maioria dos tipos | Contribuição do doente 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
> Perturbações do crescimento | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 1000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endócrino
> Perturbações do crescimento | Contribuição do doente baseada em evidências
> Realizar inquéritos/pesquisas para gerar dados | 1000 | 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 doente baseada em evidências
> Traduzir evidências e conhecimentos em contributos 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
> Perturbações do crescimento | Contribuição do doente baseada em evidências
> Traduzir evidências e conhecimentos em contributos para políticas | 1000 | 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: a maioria dos tipos | Diagnóstico e entrega de medicamentos
> Apoiar o rastreio e a deteção precoce | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Raro
> Doenças raras: a maioria dos tipos | Diagnóstico e entrega de medicamentos
> Apoiar o rastreio e a deteção 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]. | Cancro
> Cancro: a maioria dos tipos | Governação institucional
> Garantir representação nos 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]. | Cancro
> Cancro: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 5000 | 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) | Governação institucional
> Garantir representação nos 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 | Governação institucional
> Garantir representação nos 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: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 5000 | 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]. | Cancro
> Cancro: sangue | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Cancro
> Cancro: mama | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Sangramento
> Hemofilia | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | 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 | Governação institucional
> Garantir representação nos 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 | Governação institucional
> Garantir representação nos 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]. | Crónico
> Doenças crónicas em geral | Governação institucional
> Garantir representação nos 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. | Crónico
> Doenças crónicas em geral | Governação institucional
> Garantir representação nos 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 | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Cancro
> Cancro: sangue | Governação institucional
> Garantir representação nos 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: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | 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: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Raro
> Doenças raras: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangramento
> Perturbações hemorrágicas: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumático
> Doenças reumáticas: a maioria dos tipos | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 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]. | Cancro
> Cancro: sangue | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 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 | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 1000 | 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 | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 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 | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 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 | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 1000 | 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: a maioria dos tipos | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endócrino
> Perturbações do crescimento | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 1000 | 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
> Perturbações do crescimento | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 1000 | 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: a maioria dos tipos | Defender os direitos dos doentes/melhorar a qualidade de vida
> Proteger/melhorar a experiência do doente | 1000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Raro
> Doenças raras: metabólicas/lisossomais | Defender os direitos dos doentes/melhorar a qualidade de vida
> Proteger/melhorar a experiência do doente | 1000 | 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 | Defender os direitos dos doentes/melhorar a qualidade de vida
> Apoio em ações legais relacionadas com o tratamento | 1000 | National | Regularly | 119065385473 |
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