| Public consultations, public hearings, advocacy events, national and international forums. | Rak
> Rak: inne | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 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. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 5000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 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. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 5000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Krwawienie
> Hemofilia | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 1000 | Regional | Regularly | 119052656211 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Oddechowy
> Astma i POChP | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 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. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Krwawienie
> Zaburzenia krzepnięcia: większość typów | Partnerstwo regulacyjne
> Współpraca z organami regulacyjnymi | 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]. | Rak
> Rak: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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]. | Rak
> Rak: inne | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | National | Sometimes | 119025216545 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Rak
> Rak: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 5000 | National | Regularly | 119042861822 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 5000 | National | Regularly | 119042861822 |
| Engagement with ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], through the commissions of the National Health Council, on behalf of ADB [Associação de Doentes de Behçet - Behçet’s Disease Patients Association]. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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]. | Rak
> Rak: krew | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 5000 | National | Regularly | 119046302524 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care, formal communications addressed directly to SECTICS [Secretaria de Ciência, Tecnologia, Inovação e do Complexo Econômico-Industrial da Saúde - Secretariat of Science, Technology, Innovation and the Health Economic-Industrial Complex] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Krwawienie
> Zaburzenia krzepnięcia: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Oddechowy
> Oddechowy: większość schorzeń | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Upośledzenie wzroku
> Upośledzenie wzroku | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | National | Regularly | 119065385473 |
| Response to requests submitted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | HIV
> HIV | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | Local | Rarely | 119069127920 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in… monitoring and contributing to public consultations on the incorporation of medicines and health technologies. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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]. | Endokrynologiczny
> Zaburzenia wzrostu | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | National | Regularly | 119073115381 |
| We participate in COSAÚDE [Comitê Permanente de Regulação da Atenção à Saúde - Permanent Committee for Healthcare Regulation] and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Oddechowy
> Astma i POChP | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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]. | Przewlekły
> Choroby przewlekłe ogólnie | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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. | Przewlekły
> Choroby przewlekłe ogólnie | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 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]. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | Regional | Sometimes | 119077444348 |
| ANNABRA — Associação Nanismo Brasil [Brazilian Dwarfism Association] — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. | Endokrynologiczny
> Zaburzenia wzrostu | Partnerstwo regulacyjne
> Uczestniczyć w ocenach technologii medycznych (HTA) i przeglądach refundacyjnych | 1000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Wnieś wkład w zgłoszenia do Pozwolenia na Dopuszczenie do Obrotu | 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]. | Rak
> Rak: inne | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 5000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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. | Krwawienie
> Hemofilia | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 1000 | Regional | Regularly | 119052656211 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] meetings, Health Committees and Councils, and the Blood and Blood Products Coordination. | Krwawienie
> Zaburzenia krzepnięcia: większość typów | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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; | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Przewlekły
> Choroby przewlekłe ogólnie | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 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]. | Rzadki
> Rzadkie choroby: większość typów | Partnerstwo regulacyjne
> Uczestnictwo/prowadzenie spotkań z decydentami/regulatorami | 1000 | Regional | Sometimes | 119077444348 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Rak
> Rak: większość typów | Partnerstwo regulacyjne
> Z innymi rzecznikami ochrony zdrowia | 5000 | Local | Regularly | 119021005578 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Rak
> Rak: większość typów | Partnerstwo regulacyjne
> Z innymi rzecznikami ochrony zdrowia | 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]. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Partnerstwo regulacyjne
> Z innymi rzecznikami ochrony zdrowia | 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. | Neurologiczny
> Stwardnienie rozsiane | Partnerstwo regulacyjne
> Z innymi rzecznikami ochrony zdrowia | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 5000 | National | Regularly | 119045358161 |
| Participation in councils and forums; endorsement of position statements; mobilisation of parliamentarians; submission of legislative proposals and regulatory recommendations; and engagement of public opinion and regulatory authorities. | Krwawienie
> Hemofilia | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 1000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 5000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 1000 | National | Regularly | 119072208647 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 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. | Reumatyczny
> Choroby reumatyczne: większość typów | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 1000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 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. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 5000 | National | Regularly | 119074846445 |
| ANNABRA [Associação Nanismo Brasil -Brazil Dwarfism Association] advocates on behalf of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. | Endokrynologiczny
> Zaburzenia wzrostu | Wpływanie na politykę i ustawodawstwo
> Wpływaj na politykę zdrowotną i ustawodawstwo | 1000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Rak
> Rak: inne | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Rak
> Rak: ginekologiczny | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneracyjne
> Alzheimera | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 5000 | National | Regularly | 119037286447 |
| Representation of patients with SMA [Spinal Muscular Atrophy] at the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS - National Commission for the Incorporation of Technologies in the SUS (Brazilian Public Health System)] meeting held in December 2025; submission of responses and recommendations to CONITEC's preliminary reports on the reimbursement of SMA treatments; and mobilisation of public participation in open consultations. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 5000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Niepełnosprawność
> Niepełnosprawność: młodzi ludzie | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | National | Regularly | 119047401612 |
| Public hearings. | Rak
> Rak: piersi | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | Local | Regularly | 119052436713 |
| The most recent public consultations on medicines related to the treatment of breast cancer attracted participation both from individuals — patients and caregivers — within our sphere of influence, as well as formal institutional engagement. | Rak
> Rak: piersi | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | Regional | Regularly | 119063227678 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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]. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 5000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Przewlekły
> Choroby przewlekłe ogólnie | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 5000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Krwawienie
> Zaburzenia krzepnięcia: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Rak
> Rak: piersi | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumatyczny
> Toczeń | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Rak
> Rak: krew | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 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. | Endokrynologiczny
> Zaburzenia wzrostu | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 5000 | National | Regularly | 119078218520 |
| We hold seats on the CNS [Conselho Nacional de Saúde - National Health Council], coordinating the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Committee on Science, Technology, and Health Innovation] and other standing committees. We are also represented on CONADE [Conselho Nacional dos Direitos da Pessoa com Deficiência – National Council for the Rights of Persons with Disabilities], where we sit on the public policy commission, and we participate in various other committees and councils. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w publicznych przesłuchaniach i konsultacjach | 1000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 5000 | National | Regularly | 119045358161 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 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. | Krwawienie
> Hemofilia | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 1000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 1000 | National | Regularly | 119072208647 |
| Our engagement spans from participation in public consultations — including those conducted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] and ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency]. Our social oversight and mobilisation efforts are conducted strategically and also include direct engagement with regulatory authorities. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 5000 | National | Regularly | 119074846445 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. | Endokrynologiczny
> Zaburzenia wzrostu | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 1000 | National | Regularly | 119078211127 |
| We participate in public consultations and meetings with political representatives, articulating our demands on this issue and the contribution it can make to the broader policy agenda. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Mobilizowanie parlamentarzystów i liderów politycznych | 5000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Opowiadaj się za projektami ustaw i prawami dotyczącymi ochrony pacjentów | 1000 | Regional | Regularly | 119077889187 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegeneracyjne
> Alzheimera | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 5000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 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. | Krwawienie
> Hemofilia | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 1000 | Regional | Regularly | 119052656211 |
| The organization participates actively in public hearings held by the ANS (Agência Nacional de Saúde Suplementar — Brazil's National Supplementary Health Agency) and the National Congress, as well as in public consultations convened by the ANS and CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS — National Committee for Health Technology Incorporation in the Unified Health System), and contributes to the National Health Council through the seat held by Biored Brasil, an organization co-founded by AME [Amigos Múltiplos pela Esclerose - Multiple Friends for Sclerosis] , among others. The organiSation further acts as a proponent of solutions it considers to be structural in nature, directing strategies that connect all of the aforementioned bodies through the drafting of legislative bills, technical briefs, and supplementary documents intended to support — within AME's remit — the Health Technology Assessment (HTA) process in Brazil. | Neurologiczny
> Stwardnienie rozsiane | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Rzadki
> Rzadkie choroby: większość typów | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 5000 | National | Regularly | 119074846445 |
| We have participated as speakers in public hearings on disease treatment and have been involved in the drafting of public health legislation. | Reumatyczny
> Toczeń | Wpływanie na politykę i ustawodawstwo
> Uczestniczyć w opracowywaniu przepisów dotyczących zdrowia publicznego | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Rzecznictwo w zakresie cen i przystępności cenowej
> Opowiadaj się za uczciwymi cenami leków | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Ogólny stan zdrowia
> Zdrowie publiczne | Rzecznictwo w zakresie cen i przystępności cenowej
> Opowiadaj się za uczciwymi cenami leków | 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]. | Rzadki
> Rzadkie choroby: większość typów | Rzecznictwo w zakresie cen i przystępności cenowej
> Opowiadaj się za uczciwymi cenami leków | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Ogólny stan zdrowia
> Zdrowie publiczne | Rzecznictwo w zakresie cen i przystępności cenowej
> Eliminowanie barier kosztowych dla osób o niskich dochodach i osób wrażliwych | 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. | Krew
> Niedokrwistość sierpowatokrwinkowa | Rzecznictwo w zakresie cen i przystępności cenowej
> Śledzenie i monitorowanie cen leków/niedoborów leków | 5000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Rzecznictwo w zakresie cen i przystępności cenowej
> Śledzenie i monitorowanie cen leków/niedoborów leków | 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. | Neurologiczny
> Stwardnienie rozsiane | Rzecznictwo w zakresie cen i przystępności cenowej
> Śledzenie i monitorowanie cen leków/niedoborów leków | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rzadki
> Rzadkie choroby: większość typów | Rzecznictwo w zakresie cen i przystępności cenowej
> Monitorowanie zastępowania produktów | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneracyjne
> Alzheimera | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | 5000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Upośledzenie wzroku
> Upośledzenie wzroku | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | 1000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | 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]. | Neurologiczny
> Stwardnienie rozsiane | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Ogólny stan zdrowia
> Zdrowie publiczne | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | 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]. | Rak
> Rak: piersi | Rzecznictwo w zakresie cen i przystępności cenowej
> Rzecznictwo na rzecz włączenia produktu do list refundacyjnych/krajowych formularzy | 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]. | Neurologiczny
> Stwardnienie rozsiane | Rzecznictwo w zakresie cen i przystępności cenowej
> Angażowanie się w kampanie uświadamiające | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologiczny
> Stwardnienie rozsiane | Rzecznictwo w zakresie cen i przystępności cenowej
> Angażowanie się w kampanie uświadamiające | 1000 | Regional | Regularly | 119077889187 |
| Not necessarily with respect to pricing; however, when required, we engage with public authorities to ensure that patients receive the medication prescribed by their physician, regardless of whether it is low- or high-cost. | Nerwowo-mięśniowy
> Miastenia | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 1000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Krwawienie
> Hemofilia | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Rzadki
> Rzadkie choroby: większość typów | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 5000 | National | Regularly | 119055145819 |
| Position statement on the shortage of Hydroxyurea [chemotherapy to treat some blood cancers] within Brazil's public healthcare network for the treatment of these patients. | Krew
> Niedokrwistość sierpowatokrwinkowa | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 5000 | National | Sometimes | 119068055140 |
| By raising awareness and educating patients, we work to ensure that public authorities recognise the full complexity of this disease. We encourage broad participation in the public consultations held on the condition, and advocate for access to new therapies — including high-cost medications and complementary treatments — with the overarching goal of making all available treatments accessible through the SUS [Sistema Único de Saúde, Brazil's unified public health system]. | Neurologiczny
> Stwardnienie rozsiane | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 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. | Neurologiczny
> Stwardnienie rozsiane | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 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. | Reumatyczny
> Choroby reumatyczne: większość typów | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 1000 | Local | Sometimes | 119074685227 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Rzadki
> Rzadkie choroby: większość typów | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Rzadki
> Rzadkie choroby: większość typów | Usprawnianie ścieżek dostępu
> Ułatwianie równego dostępu do leków/opieki zdrowotnej | 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. | Rzadki
> Rzadkie choroby: większość typów | Usprawnianie ścieżek dostępu
> Eliminowanie dysproporcji w dostępie i zarządzaniu | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Rzadki
> Rzadkie choroby: większość typów | Usprawnianie ścieżek dostępu
> Eliminowanie dysproporcji w dostępie i zarządzaniu | 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. | Krew
> Niedokrwistość sierpowatokrwinkowa | Usprawnianie ścieżek dostępu
> Eliminowanie dysproporcji w dostępie i zarządzaniu | 5000 | National | Regularly | 119069254783 |
| Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Usprawnianie ścieżek dostępu
> Poprawa dostępu do terapii rzadkich/ultrarzadkich | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nerwowo-mięśniowy
> Rdzeniowy zanik mięśni (SMA) | Usprawnianie ścieżek dostępu
> Poprawa dostępu do terapii rzadkich/ultrarzadkich | 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]. | Upośledzenie wzroku
> Upośledzenie wzroku | Usprawnianie ścieżek dostępu
> Poprawa dostępu do terapii rzadkich/ultrarzadkich | 1000 | National | Regularly | 119065385473 |
| Although ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] does not participate directly in medicine pricing decisions — which in Brazil are conducted by CMED [Câmara de Regulação do Mercado de Medicamentos – Chamber for Medicines Market Regulation] — the organisation contributes to the public and institutional debate on treatment access, availability, and sustainability, bringing the perspective of people living with multiple sclerosis and their families. | Neurologiczny
> Stwardnienie rozsiane | Opinie pacjentów oparte na dowodach
> Wykorzystaj spostrzeżenia pacjentów do podejmowania decyzji | 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. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Opinie pacjentów oparte na dowodach
> Wykorzystaj spostrzeżenia pacjentów do podejmowania decyzji | 1000 | National | Regularly | 119077508858 |
| Advocacy meetings on behalf of therapies, presenting an up-to-date overview of the Brazilian landscape and real-world evidence. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Opinie pacjentów oparte na dowodach
> Dostarczaj dowody z rzeczywistego świata (RWE) do agencji regulacyjnych | 1000 | National | Regularly | 119077508858 |
| We contribute to the public consultations conducted by CONITEC (Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde — Brazil's national health technology assessment body) in the oncology area, doing so through FEMAMA (Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama). We frequently register patients to provide their firsthand experiences with specific treatments or new health technologies under review. | Rak
> Rak: większość typów | Opinie pacjentów oparte na dowodach
> Wykorzystaj historie pacjentów i narracje oparte na doświadczeniach życiowych | 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. | Endokrynologiczny
> Zaburzenia wzrostu | Opinie pacjentów oparte na dowodach
> Wykorzystaj historie pacjentów i narracje oparte na doświadczeniach życiowych | 1000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokrynologiczny
> Zaburzenia wzrostu | Opinie pacjentów oparte na dowodach
> Przeprowadzaj ankiety/badania w celu generowania danych | 1000 | National | Regularly | 119078198577 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... drafting technical position papers, formal institutional correspondence, and official statements in support of equitable access to treatments. | Neurologiczny
> Stwardnienie rozsiane | Opinie pacjentów oparte na dowodach
> Przekształcaj dowody i spostrzeżenia w wkład do polityki | 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. | Endokrynologiczny
> Zaburzenia wzrostu | Opinie pacjentów oparte na dowodach
> Przekształcaj dowody i spostrzeżenia w wkład do polityki | 1000 | National | Regularly | 119078211127 |
| The inclusion of AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy] in the expanded newborn screening programme [newborn heel-prick screening programme], under Brazilian Federal Law 14,154/2021, together with the relevant legislation at the municipal level in Curitiba and across the state of Paraná — and now its full implementation in Paraná. | Rzadki
> Rzadkie choroby: większość typów | Diagnoza i dostawa leków
> Wsparcie badań przesiewowych i wczesnego wykrywania | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Rzadki
> Rzadkie choroby: większość typów | Diagnoza i dostawa leków
> Wsparcie badań przesiewowych i wczesnego wykrywania | 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]. | Rak
> Rak: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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]. | Rak
> Rak: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 5000 | Local | Regularly | 119021005578 |
| Ministry of Health, ANVISA [Agência Nacional de Vigilância Sanitária – National Health Surveillance Agency], CNS [Conselho Nacional de Saúde – National Health Council], Conass [Conselho Nacional de Secretários de Saúde – National Council of State Health Secretaries], Canasems [Conselho Nacional de Secretarias Municipais de Saúde – National Council of Municipal Health Secretaries]. | Endokrynologiczny
> Cukrzyca (zarówno typ 1, jak i typ 2) | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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]. | Nerwowo-mięśniowy
> Dystrofia mięśniowa | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Rzadki
> Rzadkie choroby: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 5000 | National | Regularly | 119045358161 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Rak
> Rak: krew | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Rak
> Rak: piersi | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Krwawienie
> Hemofilia | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 1000 | Regional | Regularly | 119052656211 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in the institutional representation of people living with multiple sclerosis in Brazil, maintaining dialogue with regulatory bodies, governmental authorities, and forums involved in the formulation of public policies related to treatment access. | Neurologiczny
> Stwardnienie rozsiane | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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. | Neurologiczny
> Stwardnienie rozsiane | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Przewlekły
> Choroby przewlekłe ogólnie | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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. | Przewlekły
> Choroby przewlekłe ogólnie | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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 | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 1000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Rak
> Rak: krew | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 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. | Rzadki
> Rzadkie choroby: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 1000 | National | Regularly | 119078307187 |
| We hold seats on the CNS [Conselho Nacional de Saúde – National Health Council] and serve on the coordinating body of the CICTAF [Comissão Intersetorial de Ciência, Tecnologia e Assistência Farmacêutica - Intersectoral Commission on Science, Technology and Pharmaceutical Assistance], as well as other commissions. | Rzadki
> Rzadkie choroby: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 1000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Rzadki
> Rzadkie choroby: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Krwawienie
> Zaburzenia krzepnięcia: większość typów | Zarządzanie instytucjonalne
> Zapewnij reprezentację w rządowych organach doradczych | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumatyczny
> Choroby reumatyczne: większość typów | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 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]. | Rak
> Rak: krew | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Niepełnosprawność
> Niepełnosprawność: młodzi ludzie | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 1000 | National | Regularly | 119047401612 |
| ABEM (Associação Brasileira de Esclerose Múltipla — the Brazilian Multiple Sclerosis Association) plays an active role in the institutional representation of people living with multiple sclerosis in Brazil, engaging with regulatory bodies, government authorities, and public policy forums on issues related to treatment access. In this capacity, the organisation participates in a range of advocacy and institutional engagement activities, including: • collaboration with other civil society organisations, patient networks, and subject-matter experts to strengthen the collective representation of the interests of people living with demyelinating diseases. | Neurologiczny
> Stwardnienie rozsiane | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 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. | Neurologiczny
> Stwardnienie rozsiane | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 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 | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 1000 | National | Regularly | 119074698753 |
| We maintain partnerships with the Public Prosecutor's Office, the Public Defender's Office, the State Department of Health, municipal health secretariats, and other institutions that can support the procurement and/or approval of medications. | Rzadki
> Rzadkie choroby: większość typów | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokrynologiczny
> Zaburzenia wzrostu | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 1000 | National | Regularly | 119078198577 |
| ANNABRA — Associação Nanismo Brasil (Brazilian Dwarfism Association) — represents the interests of individuals living with dwarfism and their families across a range of institutional settings and public policy forums. The association participates in public consultations and monitors health technology assessment (HTA) processes conducted by the regulatory bodies responsible for recommendations on the reimbursement and access to medicines. In addition, ANNABRA maintains active dialogue and engagement with the National Congress, parliamentary caucuses, state legislative chambers, legislative assemblies, and health councils and bodies linked to public health. Through these channels, the association contributes technical information, family testimonies, and evidence on the needs of the dwarfism community — particularly on issues relating to access to treatments, specialist follow-up care, and health policies for conditions such as achondroplasia. This work aims to strengthen civil society participation in decision-making processes and to advance broader understanding of the specific needs of individuals living with dwarfism in Brazil. | Endokrynologiczny
> Zaburzenia wzrostu | Zarządzanie instytucjonalne
> Efektywna praca w sieciach wielointeresariuszowych | 1000 | National | Regularly | 119078211127 |
| The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Única de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs. | Reumatyczny
> Choroby reumatyczne: większość typów | Przestrzeganie praw pacjenta/poprawa jakości życia
> Ochrona/poprawa doświadczeń pacjenta | 1000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Rzadki
> Rzadkie choroby: metaboliczne/lizosomalne | Przestrzeganie praw pacjenta/poprawa jakości życia
> Ochrona/poprawa doświadczeń pacjenta | 1000 | National | Sometimes | 119075128442 |
| We are active in discussions on the incorporation of therapies into the SUS (Sistema Único de Saúde — Brazil's Unified Health System), access to high-cost medicines, participation in ATS [Avaliação de Tecnologias em Saúde – Health Technology Assessment] deliberations, and the judicialization of rare disease treatment access [the growing phenomenon of patients and advocacy groups turning to the courts to mandate state or private insurers to cover treatment costs]. | Upośledzenie wzroku
> Upośledzenie wzroku | Przestrzeganie praw pacjenta/poprawa jakości życia
> Wsparcie w działaniach prawnych związanych z leczeniem | 1000 | National | Regularly | 119065385473 |
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