| Public consultations, public hearings, advocacy events, national and international forums. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Trabajando con 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 espinal (AME) | Asociación regulatoria
> Trabajando con organismos reguladores | 5,000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuscular
> Distrofia muscular | Asociación regulatoria
> Trabajando con 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
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 5,000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Sangrado
> Hemofilia | Asociación regulatoria
> Trabajando con organismos reguladores | 1,000 | Regional | Regularly | 119052656211 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Respiratorio
> Asma y EPOC | Asociación regulatoria
> Trabajando con 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
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 10,000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Trabajando con 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]. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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]. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 10,000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Sometimes | 119025216545 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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 espinal (AME) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 5,000 | National | Regularly | 119042861822 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuscular
> Atrofia muscular espinal (AME) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 5,000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Neuromuscular
> Distrofia muscular | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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]. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 5,000 | National | Regularly | 119046302524 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care, formal communications addressed directly to SECTICS [Secretaria de Ciência, Tecnologia, Inovação e do Complexo Econômico-Industrial da Saúde - Secretariat of Science, Technology, Innovation and the Health Economic-Industrial Complex] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Neuromuscular
> Atrofia muscular espinal (AME) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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. | Respiratorio
> Respiratorio: la mayoría de las condiciones | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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. | Discapacidad visual
> Discapacidad visual | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Regularly | 119065385473 |
| Response to requests submitted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | VIH
> VIH | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | Local | Rarely | 119069127920 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in… monitoring and contributing to public consultations on the incorporation of medicines and health technologies. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Esclerosis múltiple | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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]. | Endocrino
> Trastornos del crecimiento | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Regularly | 119073115381 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Respiratorio
> Asma y EPOC | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Esclerosis múltiple | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Enfermedades crónicas en general | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Enfermedades crónicas en general | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y 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
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | Regional | Sometimes | 119077444348 |
| ANNABRA — Associação Nanismo Brasil [Brazilian Dwarfism Association] — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. | Endocrino
> Trastornos del crecimiento | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnología Sanitaria (ETS) y reembolso | 1,000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Contribuir a las presentaciones de Autorización de Comercialización | 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]. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 10,000 | National | Sometimes | 119017268057 |
| Patient representation at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meeting held in December 2025. | Neuromuscular
> Atrofia muscular espinal (AME) | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 5,000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuscular
> Atrofia muscular espinal (AME) | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 100 | National | Regularly | 119051551373 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Sangrado
> Hemofilia | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 1,000 | Regional | Regularly | 119052656211 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meetings, Health Committees and Councils, and the Blood and Blood Products Coordination. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 10,000 | National | Regularly | 119054614432 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • monitoring and contributing to public consultations on the incorporation of medicines and health technologies; • participating in public hearings and technical meetings with government bodies and institutions within the healthcare system; • institutional engagement with bodies such as the Ministry of Health, ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], particularly on matters relating to medicine access, clinical protocols, and dispensing policies; • engagement with the Public Prosecutor's Office, Public Defenders' Offices, and other social oversight bodies in cases of access barriers or medicine supply shortages; | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 10,000 | National | Regularly | 119073066358 |
| The organisation participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organisation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 100,000 | National | Regularly | 119073437945 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 100,000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Crónico
> Enfermedades crónicas en general | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 100,000 | National | Regularly | 119074690098 |
| We are continuously engaged in meetings with bodies such as Anvisa [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and the Ministry of Health [in Brazil], and we actively participate in public consultations conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables de políticas/reguladores | 1,000 | Regional | Sometimes | 119077444348 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Con otros defensores de la salud | 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]. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Con otros defensores de la salud | 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 | Asociación regulatoria
> Con otros defensores de la salud | 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
> Esclerosis múltiple | Asociación regulatoria
> Con otros defensores de la salud | 100,000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Influir en la política y legislación de salud | 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. | Sangrado
> Hemofilia | Impactando políticas y legislación
> Influir en la política y legislación de salud | 1,000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Influir en la política y legislación de salud | 5,000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Influir en la política y legislación de salud | 1,000 | National | Regularly | 119072208647 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Influir en la política y legislación de salud | 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
> Enfermedades reumáticas: la mayoría de los tipos | Impactando políticas y legislación
> Influir en la política y legislación de salud | 1,000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Influir en la política y legislación de salud | 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
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Influir en la política y legislación de salud | 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. | Endocrino
> Trastornos del crecimiento | Impactando políticas y legislación
> Influir en la política y legislación de salud | 1,000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Cáncer
> Cáncer: otro | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 10,000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Cáncer
> Cáncer: ginecológico | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativa
> Alzheimer's | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 5,000 | National | Regularly | 119037286447 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Neuromuscular
> Atrofia muscular espinal (AME) | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 5,000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Discapacidad
> Discapacidad: jóvenes | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | National | Regularly | 119047401612 |
| Public hearings. | Cáncer
> Cáncer: mama | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | Local | Regularly | 119052436713 |
| The most recent public consultations on medicines related to the treatment of breast cancer attracted participation both from individuals — patients and caregivers — within our sphere of influence, as well as formal institutional engagement. | Cáncer
> Cáncer: mama | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | Regional | Regularly | 119063227678 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Participar en audiencias públicas y 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
> Esclerosis múltiple | Impactando políticas y legislación
> Participar en audiencias públicas y 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
> Esclerosis múltiple | Impactando políticas y legislación
> Participar en audiencias públicas y 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
> Esclerosis múltiple | Impactando políticas y legislación
> Participar en audiencias públicas y 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
> Esclerosis múltiple | Impactando políticas y legislación
> Participar en audiencias públicas y 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
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 5,000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Crónico
> Enfermedades crónicas en general | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 5,000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Cáncer
> Cáncer: mama | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumático
> Lupus | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Cáncer
> Cáncer: sangre | Impactando políticas y legislación
> Participar en audiencias públicas y 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. | Endocrino
> Trastornos del crecimiento | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 5,000 | National | Regularly | 119078218520 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Participar en audiencias públicas y consultas | 1,000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 5,000 | National | Regularly | 119045358161 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Neuromuscular
> Atrofia muscular espinal (AME) | Impactando políticas y legislación
> Movilizar parlamentarios y 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. | Sangrado
> Hemofilia | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 1,000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 1,000 | National | Regularly | 119072208647 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 100,000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 5,000 | National | Regularly | 119074846445 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. | Endocrino
> Trastornos del crecimiento | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 1,000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Movilizar parlamentarios y líderes políticos | 5,000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Abogar por proyectos de ley y derechos de protección al paciente | 1,000 | Regional | Regularly | 119077889187 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegenerativa
> Alzheimer's | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 5,000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud 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. | Sangrado
> Hemofilia | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 1,000 | Regional | Regularly | 119052656211 |
| The organization participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organiSation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurológico
> Esclerosis múltiple | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100,000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 5,000 | National | Regularly | 119074846445 |
| We have participated as speakers in public hearings on disease treatment and have been involved in the drafting of public health legislation. | Reumático
> Lupus | Impactando políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | VIH
> VIH | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | 10,000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Salud general
> Salud pública | Defensa de precios y asequibilidad
> Abogar por precios justos de 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
> Enfermedades raras: la mayoría de los tipos | Defensa de precios y asequibilidad
> Abogar por precios justos de medicamentos | 10,000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Salud general
> Salud pública | Defensa de precios y asequibilidad
> Abordar las barreras de costos para personas de bajos ingresos y vulnerables | 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. | Sangre
> Enfermedad de células falciformes | Defensa de precios y asequibilidad
> Seguimiento y monitoreo de precios de medicamentos/escasez de medicamentos | 5,000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | VIH
> VIH | Defensa de precios y asequibilidad
> Seguimiento y monitoreo de precios de medicamentos/escasez 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
> Esclerosis múltiple | Defensa de precios y asequibilidad
> Seguimiento y monitoreo de precios de medicamentos/escasez 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
> Enfermedades raras: la mayoría de los tipos | Defensa de precios y asequibilidad
> Monitoreo de sustitución de productos | 10,000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativa
> Alzheimer's | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 5,000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Discapacidad visual
> Discapacidad visual | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 1,000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromuscular
> Atrofia muscular espinal (AME) | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 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
> Esclerosis múltiple | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Salud general
> Salud pública | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 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]. | Cáncer
> Cáncer: mama | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 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
> Esclerosis múltiple | Defensa de precios y asequibilidad
> Participar en campañas de concientización | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurológico
> Esclerosis múltiple | Defensa de precios y asequibilidad
> Participar en campañas de concientización | 1,000 | Regional | Regularly | 119077889187 |
| Not necessarily with respect to pricing; however, when required, we engage with public authorities to ensure that patients receive the medication prescribed by their physician, regardless of whether it is low- or high-cost. | Neuromuscular
> Miastenia grave | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 1,000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Sangrado
> Hemofilia | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Raro
> Enfermedades raras: la mayoría de los tipos | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 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. | Sangre
> Enfermedad de células falciformes | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 5,000 | National | Sometimes | 119068055140 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurológico
> Esclerosis múltiple | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 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
> Esclerosis múltiple | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 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
> Enfermedades reumáticas: la mayoría de los tipos | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 1,000 | Local | Sometimes | 119074685227 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Raro
> Enfermedades raras: la mayoría de los tipos | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 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
> Enfermedades raras: la mayoría de los tipos | Mejorando las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención médica | 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
> Enfermedades raras: la mayoría de los tipos | Mejorando las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Raro
> Enfermedades raras: la mayoría de los tipos | Mejorando las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 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. | Sangre
> Enfermedad de células falciformes | Mejorando las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 5,000 | National | Regularly | 119069254783 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Neuromuscular
> Atrofia muscular espinal (AME) | Mejorando las vías de acceso
> Mejorando el acceso 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 espinal (AME) | Mejorando las vías de acceso
> Mejorando el acceso 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]. | Discapacidad visual
> Discapacidad visual | Mejorando las vías de acceso
> Mejorando el acceso a terapias raras/ultra-raras | 1,000 | National | Regularly | 119065385473 |
| Although ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] does not participate directly in medicine pricing decisions — which in Brazil are conducted by CMED [Câmara de Regulação do Mercado de Medicamentos – Chamber for Medicines Market Regulation] — the organisation contributes to the public and institutional debate on treatment access, availability, and sustainability, bringing the perspective of people living with multiple sclerosis and their families. | Neurológico
> Esclerosis múltiple | Aportaciones del paciente basadas en evidencia
> Usa los conocimientos del paciente para tomar decisiones | 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 | Aportaciones del paciente basadas en evidencia
> Usa los conocimientos del paciente para tomar decisiones | 1,000 | National | Regularly | 119077508858 |
| Advocacy meetings on behalf of therapies, presenting an up-to-date overview of the Brazilian landscape and real-world evidence. | Neuromuscular
> Distrofia muscular | Aportaciones del paciente basadas en evidencia
> Proporcionar evidencia del mundo real (RWE) a las agencias reguladoras | 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. | Cáncer
> Cáncer: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias 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. | Endocrino
> Trastornos del crecimiento | Aportaciones del paciente basadas en evidencia
> Aproveche las historias de pacientes y narrativas de experiencias vividas | 1,000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endocrino
> Trastornos del crecimiento | Aportaciones del paciente basadas en evidencia
> Realizar encuestas/investigaciones para generar datos | 1,000 | National | Regularly | 119078198577 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... drafting technical position papers, formal institutional correspondence, and official statements in support of equitable access to treatments. | Neurológico
> Esclerosis múltiple | Aportaciones del paciente basadas en evidencia
> Traducir evidencia e información en insumos 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. | Endocrino
> Trastornos del crecimiento | Aportaciones del paciente basadas en evidencia
> Traducir evidencia e información en insumos para políticas | 1,000 | National | Regularly | 119078211127 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Raro
> Enfermedades raras: la mayoría de los tipos | Diagnóstico y entrega de medicamentos
> Apoyo al tamizaje y detección temprana | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Raro
> Enfermedades raras: la mayoría de los tipos | Diagnóstico y entrega de medicamentos
> Apoyo al tamizaje y detección temprana | 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]. | Cáncer
> Cáncer: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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]. | Cáncer
> Cáncer: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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]. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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 | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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]. | Cáncer
> Cáncer: sangre | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 10,000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Cáncer
> Cáncer: mama | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Sangrado
> Hemofilia | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 1,000 | Regional | Regularly | 119052656211 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurológico
> Esclerosis múltiple | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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
> Esclerosis múltiple | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 100,000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Crónico
> Enfermedades crónicas en general | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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
> Enfermedades crónicas en general | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 100,000 | National | Regularly | 119074690098 |
| We hold seats on the ONGs [Organizações Não Governamentais – Non-Governmental Organisations] AIDS [Acquired immunodeficiency syndrome] Forum of the State of São Paulo, the Municipal Health Secretariat of São Paulo–SP [State of São Paulo], the CTA [Centro de Testagem e Aconselhamento - Testing and Counselling Centre]-Pirituba Management Council, the Paulistano Movement in the Fight Against AIDS, and the Human Rights Council of the State Secretariat of Justice – SP[State of São Paulo]. | VIH
> VIH | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 1,000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Cáncer
> Cáncer: sangre | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 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
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 1,000 | National | Regularly | 119078307187 |
| We hold seats on the CNS [Conselho Nacional de Saúde – National Health Council] and serve on the coordinating body of the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Commission on Science, Technology and Pharmaceutical Assistance], as well as other commissions. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 1,000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 10,000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los organismos asesores gubernamentales | 100,000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 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]. | Cáncer
> Cáncer: sangre | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 10,000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Discapacidad
> Discapacidad: jóvenes | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 1,000 | National | Regularly | 119047401612 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • collaboration with other civil society organisations, patient networks, and subject-matter experts to strengthen the collective representation of the interests of people living with demyelinating diseases. | Neurológico
> Esclerosis múltiple | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 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
> Esclerosis múltiple | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 10,000 | National | Regularly | 119073066358 |
| We hold seats on the ONGs [Organizações Não Governamentais – Non-Governmental Organisations] AIDS [Acquired immunodeficiency syndrome] Forum of the State of São Paulo, the Municipal Health Secretariat of São Paulo–SP [State of São Paulo], the CTA [Centro de Testagem e Aconselhamento - Testing and Counselling Centre]-Pirituba Management Council, the Paulistano Movement in the Fight Against AIDS, and the Human Rights Council of the State Secretariat of Justice – SP[State of São Paulo]. | VIH
> VIH | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 1,000 | National | Regularly | 119074698753 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 10,000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endocrino
> Trastornos del crecimiento | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 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. | Endocrino
> Trastornos del crecimiento | Gobernanza institucional
> Trabajando eficazmente dentro de redes de múltiples partes interesadas | 1,000 | National | Regularly | 119078211127 |
| The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Única de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | 1,000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Raro
> Enfermedades raras: metabólicas/lisosomales | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | 1,000 | National | Sometimes | 119075128442 |
| We are active in discussions on the incorporation of therapies into the SUS (Sistema Único de Saúde — Brazil's Unified Health System), access to high-cost medicines, participation in ATS [Avaliação de Tecnologias em Saúde – Health Technology Assessment] deliberations, and the judicialization of rare disease treatment access [the growing phenomenon of patients and advocacy groups turning to the courts to mandate state or private insurers to cover treatment costs]. | Discapacidad visual
> Discapacidad visual | Defender los derechos del paciente/mejorar la calidad de vida
> Apoyo en acciones legales relacionadas con el tratamiento | 1,000 | National | Regularly | 119065385473 |
interacciones
acciones y defensa
43 menciones
