| Public consultations, public hearings, advocacy events, national and international forums. | Kanser
> Kanser: diğer | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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]. | Nöromüsküler
> Musküler distrofi | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 5.000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Kanama
> Hemofili | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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]. | Solunum
> Astım ve KOAH | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 10.000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Kanama
> Kanama bozuklukları: çoğu tür | Düzenleyici ortaklık
> Düzenleyici kurumlarla çalışma | 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]. | Kanser
> Kanser: çoğu türü | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Kanser
> Kanser: diğer | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 10.000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Kanser
> Kanser: çoğu türü | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Nöromüsküler
> Musküler distrofi | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Kanser
> Kanser: kan | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Kanama
> Kanama bozuklukları: çoğu tür | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Solunum
> Solunum: çoğu durum | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Görme bozukluğu
> Görme bozukluğu | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 1.000 | National | Regularly | 119065385473 |
| Response to requests submitted by CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | HIV
> HIV | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Endokrin
> Büyüme bozuklukları | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Solunum
> Astım ve KOAH | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Kronik
> Genel olarak kronik hastalıklar | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Kronik
> Genel olarak kronik hastalıklar | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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]. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 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. | Endokrin
> Büyüme bozuklukları | Düzenleyici ortaklık
> Sağlık Teknolojisi Değerlendirmesi (HTA) ve geri ödeme incelemelerine katılın | 1.000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Pazarlama Yetkilendirmesi başvurularına katkıda bulunun | 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]. | Kanser
> Kanser: diğer | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 5.000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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. | Kanama
> Hemofili | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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. | Kanama
> Kanama bozuklukları: çoğu tür | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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; | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 100.000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Kronik
> Genel olarak kronik hastalıklar | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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]. | Nadir
> Nadir hastalıklar: çoğu tür | Düzenleyici ortaklık
> Politika yapıcılar/düzenleyicilerle toplantılara katılın/kolaylaştırın | 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]. | Kanser
> Kanser: çoğu türü | Düzenleyici ortaklık
> Diğer sağlık savunucularıyla | 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]. | Kanser
> Kanser: çoğu türü | Düzenleyici ortaklık
> Diğer sağlık savunucularıyla | 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]. | Nöromüsküler
> Musküler distrofi | Düzenleyici ortaklık
> Diğer sağlık savunucularıyla | 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. | Nörolojik
> Multipl skleroz | Düzenleyici ortaklık
> Diğer sağlık savunucularıyla | 100.000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 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. | Kanama
> Hemofili | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 1.000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 5.000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 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. | Romatizmal
> Romatizmal hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 1.000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 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. | Endokrin
> Büyüme bozuklukları | Politika ve mevzuatı etkileme
> Sağlık politikası ve mevzuatını etkileme | 1.000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Kanser
> Kanser: diğer | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 10.000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Kanser
> Kanser: jinekolojik | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 1.000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Nörodejeneratif
> Alzheimer | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 5.000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Engellilik
> Engellilik: gençler | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 1.000 | National | Regularly | 119047401612 |
| Public hearings. | Kanser
> Kanser: meme | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Kanser
> Kanser: meme | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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]. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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]. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 5.000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Kronik
> Genel olarak kronik hastalıklar | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 5.000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Kanama
> Kanama bozuklukları: çoğu tür | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 1.000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Kanser
> Kanser: meme | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Romatizmal
> Lupus | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Kanser
> Kanser: kan | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Endokrin
> Büyüme bozuklukları | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Kamuoyu dinlemelerine ve istişarelere katılın | 1.000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 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. | Kanama
> Hemofili | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 1.000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 100.000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 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. | Endokrin
> Büyüme bozuklukları | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Parlamenterleri ve siyasi liderleri harekete geçirin | 5.000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Hasta koruma yasa tasarıları ve hakları için savunuculuk yapın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Nörodejeneratif
> Alzheimer | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 5.000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 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. | Kanama
> Hemofili | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 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. | Nörolojik
> Multipl skleroz | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 100.000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Nadir
> Nadir hastalıklar: çoğu tür | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 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. | Romatizmal
> Lupus | Politika ve mevzuatı etkileme
> Halk sağlığı mevzuatının hazırlanmasına katkıda bulunmak | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Adil ilaç fiyatlandırması için savunuculuk yapın | 10.000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Genel sağlık
> Halk sağlığı | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Adil ilaç fiyatlandırması için savunuculuk yapın | 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]. | Nadir
> Nadir hastalıklar: çoğu tür | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Adil ilaç fiyatlandırması için savunuculuk yapın | 10.000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Genel sağlık
> Halk sağlığı | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Düşük gelirli ve savunmasız bireyler için maliyet engellerini giderin | 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. | Kan
> Orak hücreli anemi | Fiyatlandırma ve erişilebilirlik savunuculuğu
> İlaç fiyatlandırması/ilaç kıtlığının takibi ve izlenmesi | 5.000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Fiyatlandırma ve erişilebilirlik savunuculuğu
> İlaç fiyatlandırması/ilaç kıtlığının takibi ve izlenmesi | 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. | Nörolojik
> Multipl skleroz | Fiyatlandırma ve erişilebilirlik savunuculuğu
> İlaç fiyatlandırması/ilaç kıtlığının takibi ve izlenmesi | 10.000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Nadir
> Nadir hastalıklar: çoğu tür | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürün ikamesini izleme | 10.000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Nörodejeneratif
> Alzheimer | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | 5.000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Görme bozukluğu
> Görme bozukluğu | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | 1.000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | 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]. | Nörolojik
> Multipl skleroz | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Genel sağlık
> Halk sağlığı | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | 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]. | Kanser
> Kanser: meme | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Ürünün geri ödeme listelerine/ulusal formülerlere dahil edilmesi için savunuculuk yapma | 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]. | Nörolojik
> Multipl skleroz | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Farkındalık kampanyaları yürütme | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Nörolojik
> Multipl skleroz | Fiyatlandırma ve erişilebilirlik savunuculuğu
> Farkındalık kampanyaları yürütme | 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. | Nöromüsküler
> Miyastenia gravis | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 1.000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Kanama
> Hemofili | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Nadir
> Nadir hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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. | Kan
> Orak hücreli anemi | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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]. | Nörolojik
> Multipl skleroz | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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. | Nörolojik
> Multipl skleroz | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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. | Romatizmal
> Romatizmal hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 10.000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Nadir
> Nadir hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> İlaçlara/sağlık hizmetlerine eşit erişimi kolaylaştırma | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> Erişim ve yönetimdeki eşitsizlikleri giderin | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Nadir
> Nadir hastalıklar: çoğu tür | Erişim yollarının iyileştirilmesi
> Erişim ve yönetimdeki eşitsizlikleri giderin | 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. | Kan
> Orak hücreli anemi | Erişim yollarının iyileştirilmesi
> Erişim ve yönetimdeki eşitsizlikleri giderin | 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. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Erişim yollarının iyileştirilmesi
> Nadir/ultra-nadir tedavilere erişimin iyileştirilmesi | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nöromüsküler
> Spinal müsküler atrofi (SMA) | Erişim yollarının iyileştirilmesi
> Nadir/ultra-nadir tedavilere erişimin iyileştirilmesi | 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]. | Görme bozukluğu
> Görme bozukluğu | Erişim yollarının iyileştirilmesi
> Nadir/ultra-nadir tedavilere erişimin iyileştirilmesi | 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. | Nörolojik
> Multipl skleroz | Kanıta dayalı hasta girdisi
> Kararları bilgilendirmek için hasta içgörülerini kullanın | 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. | Nöromüsküler
> Musküler distrofi | Kanıta dayalı hasta girdisi
> Kararları bilgilendirmek için hasta içgörülerini kullanın | 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. | Nöromüsküler
> Musküler distrofi | Kanıta dayalı hasta girdisi
> Düzenleyici kurumlara Gerçek Dünya Kanıtı (RWE) sağlayın | 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. | Kanser
> Kanser: çoğu türü | Kanıta dayalı hasta girdisi
> Hasta hikayelerinden ve yaşanmış deneyim anlatılarından yararlanın | 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. | Endokrin
> Büyüme bozuklukları | Kanıta dayalı hasta girdisi
> Hasta hikayelerinden ve yaşanmış deneyim anlatılarından yararlanın | 1.000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokrin
> Büyüme bozuklukları | Kanıta dayalı hasta girdisi
> Veri oluşturmak için anket/araştırma yürütün | 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. | Nörolojik
> Multipl skleroz | Kanıta dayalı hasta girdisi
> Kanıtları ve içgörüleri politika girdisine dönüştürün | 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. | Endokrin
> Büyüme bozuklukları | Kanıta dayalı hasta girdisi
> Kanıtları ve içgörüleri politika girdisine dönüştürün | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Tanı ve ilaç teslimatı
> Tarama ve erken teşhisi destekleyin | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Nadir
> Nadir hastalıklar: çoğu tür | Tanı ve ilaç teslimatı
> Tarama ve erken teşhisi destekleyin | 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]. | Kanser
> Kanser: çoğu türü | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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]. | Kanser
> Kanser: çoğu türü | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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]. | Endokrin
> Diyabet (hem tip 1 hem de tip 2) | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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]. | Nöromüsküler
> Musküler distrofi | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Nadir
> Nadir hastalıklar: çoğu tür | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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]. | Kanser
> Kanser: kan | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 10.000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Kanser
> Kanser: meme | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Kanama
> Hemofili | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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. | Nörolojik
> Multipl skleroz | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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. | Nörolojik
> Multipl skleroz | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 100.000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Kronik
> Genel olarak kronik hastalıklar | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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. | Kronik
> Genel olarak kronik hastalıklar | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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 | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 1.000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Kanser
> Kanser: kan | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 1.000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Nadir
> Nadir hastalıklar: çoğu tür | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 10.000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Kanama
> Kanama bozuklukları: çoğu tür | Kurumsal yönetişim
> Hükümet danışma organlarında temsili sağlayın | 100.000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Romatizmal
> Romatizmal hastalıklar: çoğu tür | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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]. | Kanser
> Kanser: kan | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 10.000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Engellilik
> Engellilik: gençler | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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. | Nörolojik
> Multipl skleroz | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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. | Nörolojik
> Multipl skleroz | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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 | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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. | Nadir
> Nadir hastalıklar: çoğu tür | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 10.000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokrin
> Büyüme bozuklukları | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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. | Endokrin
> Büyüme bozuklukları | Kurumsal yönetişim
> Çok paydaşlı ağlar içinde etkin çalışma | 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. | Romatizmal
> Romatizmal hastalıklar: çoğu tür | Hasta haklarını koruma/yaşam kalitesini iyileştirme
> Hasta deneyimini koruma/iyileştirme | 1.000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Nadir
> Nadir hastalıklar: metabolik/lizozomal | Hasta haklarını koruma/yaşam kalitesini iyileştirme
> Hasta deneyimini koruma/iyileştirme | 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]. | Görme bozukluğu
> Görme bozukluğu | Hasta haklarını koruma/yaşam kalitesini iyileştirme
> Tedaviyle ilgili hukuki işlemlerde destek | 1.000 | National | Regularly | 119065385473 |
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