| Public consultations, public hearings, advocacy events, national and international forums. | Cancer
> Cancer: other | Regulatory partnership
> Working with regulatory bodies | 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
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Working with regulatory bodies | 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
> Muscular dystrophy | Regulatory partnership
> Working with regulatory bodies | 100 | Regional | Regularly | 119045134485 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], Ministry of Health, and others. | Rare
> Rare diseases: most types | Regulatory partnership
> Working with regulatory bodies | 5,000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Bleeding
> Haemophilia | Regulatory partnership
> Working with regulatory bodies | 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]. | Respiratory
> Asthma and COPD | Regulatory partnership
> Working with regulatory bodies | 10,000 | National | Regularly | 119073295628 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Rare
> Rare diseases: most types | Regulatory partnership
> Working with regulatory bodies | 10,000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Working with regulatory bodies | 100,000 | National | Regularly | 119083316815 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100 | National | Sometimes | 115043432408 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 119025216545 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Muscular dystrophy | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100 | Regional | Regularly | 119045134485 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Regularly | 119046062542 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], Ministry of Health, and others. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Respiratory
> Respiratory: most conditions | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Visual impairment
> Visual impairment | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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 | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Endocrine
> Growth disorders | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Respiratory
> Asthma and COPD | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Chronic
> Chronic diseases in general | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Chronic
> Chronic diseases in general | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Regularly | 119074690098 |
| We are continuously engaged in meetings with bodies such as Anvisa [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and the Ministry of Health [in Brazil], and we actively participate in public consultations conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Endocrine
> Growth disorders | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Rare
> Rare diseases: most types | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 100 | Regional | No | 119078233817 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: other | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 5,000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Bleeding
> Haemophilia | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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; | Neurological
> Multiple sclerosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 100,000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Chronic
> Chronic diseases in general | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 100,000 | National | Regularly | 119074690098 |
| We are continuously engaged in meetings with bodies such as Anvisa [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and the Ministry of Health [in Brazil], and we actively participate in public consultations conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Rare
> Rare diseases: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 1,000 | Regional | Sometimes | 119077444348 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: most types | Regulatory partnership
> With other healthcare advocates | 5,000 | Local | Regularly | 119021005578 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: most types | Regulatory partnership
> With other healthcare advocates | 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
> Muscular dystrophy | Regulatory partnership
> With other healthcare advocates | 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. | Neurological
> Multiple sclerosis | Regulatory partnership
> With other healthcare advocates | 100,000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Bleeding
> Haemophilia | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 5,000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Rheumatic
> Rheumatic diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Influence healthcare policy and legislation | 100,000 | National | Regularly | 119074690047 |
| Through our presence in Brasília — engaging with health authorities and the National Congress in the development and defence of public health policies. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Endocrine
> Growth disorders | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Cancer
> Cancer: other | Impacting policy and legislation
> Participate in public hearings and consultations | 10,000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Cancer
> Cancer: gynaecological | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerative
> Alzheimer’s | Impacting policy and legislation
> Participate in public hearings and consultations | 5,000 | National | Regularly | 119037286447 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuscular
> Spinal muscular atrophy (SMA) | Impacting policy and legislation
> Participate in public hearings and consultations | 5,000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Disability
> Disability: young people | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | National | Regularly | 119047401612 |
| Public hearings. | Cancer
> Cancer: breast | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | Local | Regularly | 119052436713 |
| The most recent public consultations on medicines related to the treatment of breast cancer attracted participation both from individuals — patients and caregivers — within our sphere of influence, as well as formal institutional engagement. | Cancer
> Cancer: breast | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | Regional | Regularly | 119063227678 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Participate in public hearings and consultations | Not specified | Local | Regularly | 119072244093 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... The participation in public hearings and technical meetings with governmental bodies and institutions within the health system. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Participate in public hearings and consultations | 10,000 | National | Regularly | 119073066358 |
| The organisation participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organisation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Participate in public hearings and consultations | 100,000 | National | Regularly | 119073437945 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Participate in public hearings and consultations | 100,000 | National | Regularly | 119074690047 |
| Activities range from participation in public consultations held by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and the ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Participate in public hearings and consultations | 100,000 | National | Regularly | 119074690047 |
| Through our presence in Brasília — engaging with health authorities and the National Congress in the development and defence of public health policies. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Participate in public hearings and consultations | 5,000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Chronic
> Chronic diseases in general | Impacting policy and legislation
> Participate in public hearings and consultations | 5,000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Bleeding
> Bleeding disorders: most types | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Cancer
> Cancer: breast | Impacting policy and legislation
> Participate in public hearings and consultations | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Rheumatic
> Lupus | Impacting policy and legislation
> Participate in public hearings and consultations | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Cancer
> Cancer: blood | Impacting policy and legislation
> Participate in public hearings and consultations | 10,000 | National | Regularly | 119078150255 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. | Endocrine
> Growth disorders | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Participate in public hearings and consultations | 5,000 | National | Regularly | 119078218520 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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
> Spinal muscular atrophy (SMA) | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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. | Bleeding
> Haemophilia | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 1,000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 100,000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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. | Endocrine
> Growth disorders | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 1,000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 5,000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Advocate for patient protection bills and rights | 1,000 | Regional | Regularly | 119077889187 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegenerative
> Alzheimer’s | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 5,000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 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. | Bleeding
> Haemophilia | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 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. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 100,000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rare
> Rare diseases: most types | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 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. | Rheumatic
> Lupus | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 10,000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | General health
> Public health | Pricing and affordability advocacy
> Advocate for fair medicine pricing | We do not communicate with patients directly | National | Rarely | 119073385147 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rare
> Rare diseases: most types | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 10,000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | General health
> Public health | Pricing and affordability advocacy
> Address cost barriers for low-income and vulnerable people | 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. | Blood
> Sickle cell disease | Pricing and affordability advocacy
> Tracking and monitoring drug pricing/drug shortages | 5,000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Pricing and affordability advocacy
> Tracking and monitoring drug pricing/drug shortages | 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. | Neurological
> Multiple sclerosis | Pricing and affordability advocacy
> Tracking and monitoring drug pricing/drug shortages | 10,000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rare
> Rare diseases: most types | Pricing and affordability advocacy
> Monitoring product substitution | 10,000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerative
> Alzheimer’s | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 5,000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Visual impairment
> Visual impairment | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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
> Spinal muscular atrophy (SMA) | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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]. | Neurological
> Multiple sclerosis | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | General health
> Public health | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | We do not communicate with patients directly | National | Rarely | 119073385147 |
| We run campaigns advocating for the inclusion of medicines in the SUS [Sistema Único de Saúde – Unified Health System]. | Cancer
> Cancer: breast | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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]. | Neurological
> Multiple sclerosis | Pricing and affordability advocacy
> Engaging in awareness campaigns | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurological
> Multiple sclerosis | Pricing and affordability advocacy
> Engaging in awareness campaigns | 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
> Myasthenia gravis | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Bleeding
> Haemophilia | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rare
> Rare diseases: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Blood
> Sickle cell disease | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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]. | Neurological
> Multiple sclerosis | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Neurological
> Multiple sclerosis | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Rheumatic
> Rheumatic diseases: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | Local | Sometimes | 119074685227 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Rare
> Rare diseases: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 10,000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rare
> Rare diseases: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 10,000 | National | Rarely | 119078192576 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Rare
> Rare diseases: most types | Improving access pathways
> Address disparities in access and management | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rare
> Rare diseases: most types | Improving access pathways
> Address disparities in access and management | 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. | Blood
> Sickle cell disease | Improving access pathways
> Address disparities in access and management | 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
> Spinal muscular atrophy (SMA) | Improving access pathways
> Improving access to rare/ultra-rare therapies | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Spinal muscular atrophy (SMA) | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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]. | Visual impairment
> Visual impairment | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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. | Neurological
> Multiple sclerosis | Evidence-based patient input
> Use patient insights to inform decisions | 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
> Muscular dystrophy | Evidence-based patient input
> Use patient insights to inform decisions | 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
> Muscular dystrophy | Evidence-based patient input
> Provide Real-World Evidence (RWE) to regulatory agencies | 1,000 | National | Regularly | 119077508858 |
| We contribute to the public consultations conducted by CONITEC (Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde — Brazil's national health technology assessment body) in the oncology area, doing so through FEMAMA (Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama). We frequently register patients to provide their firsthand experiences with specific treatments or new health technologies under review. | Cancer
> Cancer: most types | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 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. | Endocrine
> Growth disorders | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 1,000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endocrine
> Growth disorders | Evidence-based patient input
> Conduct surveys/research to generate data | 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. | Neurological
> Multiple sclerosis | Evidence-based patient input
> Translate evidence and insights into policy input | 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. | Endocrine
> Growth disorders | Evidence-based patient input
> Translate evidence and insights into policy input | 1,000 | National | Regularly | 119078211127 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Rare
> Rare diseases: most types | Diagnosis and medicines delivery
> Support screening and early detection | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Rare
> Rare diseases: most types | Diagnosis and medicines delivery
> Support screening and early detection | 100 | National | Regularly | 119052447696 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | National | Sometimes | 115043432408 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 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]. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Ensure representation within governmental advisory bodies | 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
> Muscular dystrophy | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rare
> Rare diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 5,000 | National | Regularly | 119045358161 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blood | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Cancer
> Cancer: breast | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Bleeding
> Haemophilia | Institutional governance
> Ensure representation within governmental advisory bodies | 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. | Neurological
> Multiple sclerosis | Institutional governance
> Ensure representation within governmental advisory bodies | 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. | Neurological
> Multiple sclerosis | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Chronic
> Chronic diseases in general | Institutional governance
> Ensure representation within governmental advisory bodies | 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. | Chronic
> Chronic diseases in general | Institutional governance
> Ensure representation within governmental advisory bodies | 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 | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Cancer
> Cancer: blood | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119078150255 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Rare
> Rare diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 119078307187 |
| We hold seats on the CNS [Conselho Nacional de Saúde – National Health Council] and serve on the coordinating body of the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Commission on Science, Technology and Pharmaceutical Assistance], as well as other commissions. | Rare
> Rare diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Rare
> Rare diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Bleeding
> Bleeding disorders: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Rheumatic
> Rheumatic diseases: most types | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | Local | Sometimes | 119014521397 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blood | Institutional governance
> Working effectively within multi-stakeholder networks | 10,000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Disability
> Disability: young people | Institutional governance
> Working effectively within multi-stakeholder networks | 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. | Neurological
> Multiple sclerosis | Institutional governance
> Working effectively within multi-stakeholder networks | 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. | Neurological
> Multiple sclerosis | Institutional governance
> Working effectively within multi-stakeholder networks | 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 | Institutional governance
> Working effectively within multi-stakeholder networks | 1,000 | National | Regularly | 119074698753 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Rare
> Rare diseases: most types | Institutional governance
> Working effectively within multi-stakeholder networks | 10,000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endocrine
> Growth disorders | Institutional governance
> Working effectively within multi-stakeholder networks | 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. | Endocrine
> Growth disorders | Institutional governance
> Working effectively within multi-stakeholder networks | 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. | Rheumatic
> Rheumatic diseases: most types | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 1,000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Rare
> Rare diseases: metabolic/lysosomal | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 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]. | Visual impairment
> Visual impairment | Upholding patient rights/improving quality of life
> Support in treatment-related legal actions | 1,000 | National | Regularly | 119065385473 |
interactions
actions & advocacy
43 mentions
