| Public consultations, public hearings, advocacy events, national and international forums. | Cancer
> Cancer: övrigt | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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]. | Neuromuskulär
> Muskeldystrofi | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 5 000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Blödning
> Hemofili | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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]. | Andning
> Astma och KOL | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blödning
> Blödningsrubbningar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 100 000 | National | Regularly | 119083316815 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 100 | National | Sometimes | 115043432408 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: övrigt | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 1 000 | National | Sometimes | 119025216545 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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]. | Neuromuskulär
> Muskeldystrofi | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 100 | Regional | Regularly | 119045134485 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blod | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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]. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Blödning
> Blödningsrubbningar: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Andning
> Andning: de flesta tillstånd | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Synnedsättning
> Synnedsättning | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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 | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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
> Tillväxtstörningar | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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]. | Andning
> Astma och KOL | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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]. | Kronisk
> Kroniska sjukdomar i allmänhet | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Kronisk
> Kroniska sjukdomar i allmänhet | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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
> Tillväxtstörningar | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 1 000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Bidra till inlämningar för marknadsföringstillstånd | 100 | Regional | No | 119078233817 |
| Meetings at the Ministry of Health, ANS [Agência Nacional de Saúde Suplementar – National Supplementary Health Agency], and CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: övrigt | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 5 000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Blödning
> Hemofili | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Blödning
> Blödningsrubbningar: de flesta typer | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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; | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Kronisk
> Kroniska sjukdomar i allmänhet | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 1 000 | Regional | Sometimes | 119077444348 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: de flesta typer | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 5 000 | Local | Regularly | 119021005578 |
| We have contributed to the CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation] public consultations relating to oncology, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: de flesta typer | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 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]. | Neuromuskulär
> Muskeldystrofi | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 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. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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. | Blödning
> Hemofili | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 1 000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 5 000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 1 000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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
> Tillväxtstörningar | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 1 000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Cancer
> Cancer: övrigt | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Cancer
> Cancer: gynekologisk | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 1 000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativ
> Alzheimers | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 5 000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Funktionsnedsättning
> Funktionsnedsättning: unga människor | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 1 000 | National | Regularly | 119047401612 |
| Public hearings. | Cancer
> Cancer: bröst | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 1 000 | Local | Regularly | 119052436713 |
| The most recent public consultations on medicines related to the treatment of breast cancer attracted participation both from individuals — patients and caregivers — within our sphere of influence, as well as formal institutional engagement. | Cancer
> Cancer: bröst | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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]. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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]. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 5 000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Kronisk
> Kroniska sjukdomar i allmänhet | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 5 000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Blödning
> Blödningsrubbningar: de flesta typer | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 1 000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Cancer
> Cancer: bröst | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumatisk
> Lupus | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Cancer
> Cancer: blod | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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
> Tillväxtstörningar | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 1 000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 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. | Blödning
> Hemofili | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 1 000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 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
> Tillväxtstörningar | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 5 000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Förespråka lagstiftning och rättigheter för patientskydd | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegenerativ
> Alzheimers | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 5 000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 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. | Blödning
> Hemofili | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 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. | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 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. | Reumatisk
> Lupus | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Påverkansarbete för prissättning och prisvärdhet
> Förespråka rättvisa läkemedelspriser | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allmän hälsa
> Folkhälsa | Påverkansarbete för prissättning och prisvärdhet
> Förespråka rättvisa läkemedelspriser | 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]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverkansarbete för prissättning och prisvärdhet
> Förespråka rättvisa läkemedelspriser | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allmän hälsa
> Folkhälsa | Påverkansarbete för prissättning och prisvärdhet
> Åtgärda kostnadshinder för låginkomsttagare och utsatta personer | 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. | Blod
> Sickelcellanemi | Påverkansarbete för prissättning och prisvärdhet
> Spårning och övervakning av läkemedelspriser/läkemedelsbrister | 5 000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Påverkansarbete för prissättning och prisvärdhet
> Spårning och övervakning av läkemedelspriser/läkemedelsbrister | 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. | Neurologisk
> Multipel skleros | Påverkansarbete för prissättning och prisvärdhet
> Spårning och övervakning av läkemedelspriser/läkemedelsbrister | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Påverkansarbete för prissättning och prisvärdhet
> Övervakning av produktsubstitution | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegenerativ
> Alzheimers | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 5 000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Synnedsättning
> Synnedsättning | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 1 000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 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]. | Neurologisk
> Multipel skleros | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Allmän hälsa
> Folkhälsa | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | We do not communicate with patients directly | National | Rarely | 119073385147 |
| We run campaigns advocating for the inclusion of medicines in the SUS [Sistema Único de Saúde – Unified Health System]. | Cancer
> Cancer: bröst | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 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]. | Neurologisk
> Multipel skleros | Påverkansarbete för prissättning och prisvärdhet
> Engagera sig i medvetenhetskampanjer | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologisk
> Multipel skleros | Påverkansarbete för prissättning och prisvärdhet
> Engagera sig i medvetenhetskampanjer | 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. | Neuromuskulär
> Myasthenia gravis | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 1 000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Blödning
> Hemofili | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Blod
> Sickelcellanemi | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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]. | Neurologisk
> Multipel skleros | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Neurologisk
> Multipel skleros | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 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. | Blod
> Sickelcellanemi | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 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. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Förbättra åtkomstvägar
> Förbättra tillgången till sällsynta/ultrasällsynta terapier | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulär
> Spinal muskelatrofi (SMA) | Förbättra åtkomstvägar
> Förbättra tillgången till sällsynta/ultrasällsynta terapier | 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]. | Synnedsättning
> Synnedsättning | Förbättra åtkomstvägar
> Förbättra tillgången till sällsynta/ultrasällsynta terapier | 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. | Neurologisk
> Multipel skleros | Evidensbaserat patientinput
> Använd patientinsikter för att informera beslut | 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. | Neuromuskulär
> Muskeldystrofi | Evidensbaserat patientinput
> Använd patientinsikter för att informera beslut | 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. | Neuromuskulär
> Muskeldystrofi | Evidensbaserat patientinput
> Tillhandahåll verkliga bevis (RWE) till tillsynsmyndigheter | 1 000 | National | Regularly | 119077508858 |
| We contribute to the public consultations conducted by CONITEC (Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde — Brazil's national health technology assessment body) in the oncology area, doing so through FEMAMA (Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama). We frequently register patients to provide their firsthand experiences with specific treatments or new health technologies under review. | Cancer
> Cancer: de flesta typer | Evidensbaserat patientinput
> Utnyttja patientberättelser och narrativ från levd erfarenhet | 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
> Tillväxtstörningar | Evidensbaserat patientinput
> Utnyttja patientberättelser och narrativ från levd erfarenhet | 1 000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokrin
> Tillväxtstörningar | Evidensbaserat patientinput
> Genomför undersökningar/forskning för att generera data | 1 000 | National | Regularly | 119078198577 |
| ABEM [Associação Brasileira de Esclerose Múltipla -Brazilian Multiple Sclerosis Association] is actively engaged in ... drafting technical position papers, formal institutional correspondence, and official statements in support of equitable access to treatments. | Neurologisk
> Multipel skleros | Evidensbaserat patientinput
> Omvandla bevis och insikter till policyunderlag | 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
> Tillväxtstörningar | Evidensbaserat patientinput
> Omvandla bevis och insikter till policyunderlag | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Diagnos och läkemedelsleverans
> Stöd för screening och tidig upptäckt | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Diagnos och läkemedelsleverans
> Stöd för screening och tidig upptäckt | 100 | National | Regularly | 119052447696 |
| Both within representative bodies and among regulators such as CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Cancer
> Cancer: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 | National | Sometimes | 115043432408 |
| We hold seats on the Municipal Health Council of Salvador, the State Health Council of Bahia, and the National Health Council, through FEMAMA [Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama – Brazilian Federation of Philanthropic Institutions Supporting Breast Health]. | Cancer
> Cancer: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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]. | Neuromuskulär
> Muskeldystrofi | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 5 000 | National | Regularly | 119045358161 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blod | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Cancer
> Cancer: bröst | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Blödning
> Hemofili | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Neurologisk
> Multipel skleros | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Neurologisk
> Multipel skleros | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Kronisk
> Kroniska sjukdomar i allmänhet | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Kronisk
> Kroniska sjukdomar i allmänhet | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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 | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 1 000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Cancer
> Cancer: blod | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 1 000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blödning
> Blödningsrubbningar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 100 | Local | Sometimes | 119014521397 |
| Our organisation is a member of the Advisory Board of INCA [Instituto Nacional de Câncer – National Cancer Institute] (CONSINCA [Conselho Consultivo do INCA – Advisory Board of INCA]), CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation], and COSAÚDE [Comitê de Saúde Suplementar -Supplementary Health Committee]. | Cancer
> Cancer: blod | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Funktionsnedsättning
> Funktionsnedsättning: unga människor | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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. | Neurologisk
> Multipel skleros | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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. | Neurologisk
> Multipel skleros | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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 | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokrin
> Tillväxtstörningar | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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
> Tillväxtstörningar | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Upprätthålla patienträttigheter/förbättra livskvalitet
> Skydda/förbättra patientupplevelsen | 1 000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Sällsynt
> Sällsynta sjukdomar: metaboliska/lysosomala | Upprätthålla patienträttigheter/förbättra livskvalitet
> Skydda/förbättra patientupplevelsen | 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]. | Synnedsättning
> Synnedsättning | Upprätthålla patienträttigheter/förbättra livskvalitet
> Stöd vid behandlingsrelaterade rättsliga åtgärder | 1 000 | National | Regularly | 119065385473 |
interaktioner
åtgärder & påverkansarbete
43 omnämnanden
