| Public consultations, public hearings, advocacy events, national and international forums. | Kreft
> Kreft: annet | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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]. | Nevromuskulær
> Muskeldystrofi | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 5 000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Blødning
> Hemofili | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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]. | Respiratorisk
> Astma og KOLS | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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]. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Kreft
> Kreft: annet | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Nevromuskulær
> Muskeldystrofi | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Kreft
> Kreft: blod | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Respiratorisk
> Luftveier: de fleste tilstander | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Synshemming
> Synshemming | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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 | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Vekstsykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Respiratorisk
> Astma og KOLS | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Kroniske sykdommer generelt | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Kroniske sykdommer generelt | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Vekstsykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 1 000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Bidra til innsendinger for markedsføringstillatelse | 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]. | Kreft
> Kreft: annet | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 5 000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Blødning
> Hemofili | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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; | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Kronisk
> Kroniske sykdommer generelt | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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]. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Med andre helseadvokater | 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]. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Med andre helseadvokater | 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]. | Nevromuskulær
> Muskeldystrofi | Regulatorisk partnerskap
> Med andre helseadvokater | 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. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Med andre helseadvokater | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Blødning
> Hemofili | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 1 000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 5 000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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
> Revmatiske sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 1 000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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
> Vekstsykdommer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 1 000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Kreft
> Kreft: annet | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Kreft
> Kreft: gynekologisk | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 1 000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Nevrodegenerativ
> Alzheimers | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 5 000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Funksjonshemming
> Funksjonshemming: unge mennesker | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 1 000 | National | Regularly | 119047401612 |
| Public hearings. | Kreft
> Kreft: bryst | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Kreft
> Kreft: bryst | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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]. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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]. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 5 000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Kronisk
> Kroniske sykdommer generelt | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 5 000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Blødning
> Blødningsforstyrrelser: de fleste typer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 1 000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Kreft
> Kreft: bryst | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumatisk
> Lupus | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Kreft
> Kreft: blod | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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
> Vekstsykdommer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 1 000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Blødning
> Hemofili | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 1 000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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
> Vekstsykdommer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 5 000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Tal pasientvernlovforslag og rettigheter | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Nevrodegenerativ
> Alzheimers | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 5 000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 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. | Blødning
> Hemofili | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 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. | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Sjelden
> Sjeldne sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 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 | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Generell helse
> Folkehelse | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 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]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Generell helse
> Folkehelse | Prising og tilgjengelighetsadvokatur
> Adresser kostnadsbarrierer for lavinntekts- og sårbare grupper | 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
> Sigdcelleanemi | Prising og tilgjengelighetsadvokatur
> Sporing og overvåking av legemiddelpriser/legemiddelmangel | 5 000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Prising og tilgjengelighetsadvokatur
> Sporing og overvåking av legemiddelpriser/legemiddelmangel | 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. | Nevrologisk
> Multippel sklerose | Prising og tilgjengelighetsadvokatur
> Sporing og overvåking av legemiddelpriser/legemiddelmangel | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Prising og tilgjengelighetsadvokatur
> Overvåker produkterstatning | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Nevrodegenerativ
> Alzheimers | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 5 000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Synshemming
> Synshemming | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 1 000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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]. | Nevrologisk
> Multippel sklerose | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Generell helse
> Folkehelse | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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]. | Kreft
> Kreft: bryst | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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]. | Nevrologisk
> Multippel sklerose | Prising og tilgjengelighetsadvokatur
> Engasjere seg i bevissthetskampanjer | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Nevrologisk
> Multippel sklerose | Prising og tilgjengelighetsadvokatur
> Engasjere seg i bevissthetskampanjer | 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. | Nevromuskulær
> Myasthenia gravis | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 1 000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Blødning
> Hemofili | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Sjelden
> Sjeldne sykdommer: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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
> Sigdcelleanemi | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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]. | Nevrologisk
> Multippel sklerose | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Nevrologisk
> Multippel sklerose | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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
> Revmatiske sykdommer: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Sjelden
> Sjeldne sykdommer: de fleste typer | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 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
> Sigdcelleanemi | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 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. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne terapier | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Nevromuskulær
> Spinal muskelatrofi (SMA) | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne 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]. | Synshemming
> Synshemming | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne 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. | Nevrologisk
> Multippel sklerose | Evidensbasert pasientinnspill
> Bruk pasientinnsikt til å informere beslutninger | 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. | Nevromuskulær
> Muskeldystrofi | Evidensbasert pasientinnspill
> Bruk pasientinnsikt til å informere beslutninger | 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. | Nevromuskulær
> Muskeldystrofi | Evidensbasert pasientinnspill
> Gi Real-World Evidence (RWE) til regulatoriske myndigheter | 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. | Kreft
> Kreft: de fleste typer | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | 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
> Vekstsykdommer | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | 1 000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokrin
> Vekstsykdommer | Evidensbasert pasientinnspill
> Gjennomfør undersøkelser/forskning for å generere 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. | Nevrologisk
> Multippel sklerose | Evidensbasert pasientinnspill
> Oversett bevis og innsikt til politikkinnspill | 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
> Vekstsykdommer | Evidensbasert pasientinnspill
> Oversett bevis og innsikt til politikkinnspill | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Diagnose og medisinlevering
> Støtte til screening og tidlig oppdagelse | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Sjelden
> Sjeldne sykdommer: de fleste typer | Diagnose og medisinlevering
> Støtte til screening og tidlig oppdagelse | 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]. | Kreft
> Kreft: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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]. | Kreft
> Kreft: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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 type 1 og type 2) | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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]. | Nevromuskulær
> Muskeldystrofi | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Sjelden
> Sjeldne sykdommer: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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]. | Kreft
> Kreft: blod | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Kreft
> Kreft: bryst | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Blødning
> Hemofili | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Nevrologisk
> Multippel sklerose | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Nevrologisk
> Multippel sklerose | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Kronisk
> Kroniske sykdommer generelt | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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
> Kroniske sykdommer generelt | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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 | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 1 000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Kreft
> Kreft: blod | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 1 000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Sjelden
> Sjeldne sykdommer: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Blødning
> Blødningsforstyrrelser: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumatisk
> Revmatiske sykdommer: de fleste typer | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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]. | Kreft
> Kreft: blod | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Funksjonshemming
> Funksjonshemming: unge mennesker | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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. | Nevrologisk
> Multippel sklerose | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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. | Nevrologisk
> Multippel sklerose | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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 | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokrin
> Vekstsykdommer | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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
> Vekstsykdommer | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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
> Revmatiske sykdommer: de fleste typer | Ivaretakelse av pasientrettigheter/forbedring av livskvalitet
> Beskytte/forbedre pasientopplevelsen | 1 000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Sjelden
> Sjeldne sykdommer: metabolske/lysosomale | Ivaretakelse av pasientrettigheter/forbedring av livskvalitet
> Beskytte/forbedre pasientopplevelsen | 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]. | Synshemming
> Synshemming | Ivaretakelse av pasientrettigheter/forbedring av livskvalitet
> Støtte i behandlingsrelaterte juridiske saker | 1 000 | National | Regularly | 119065385473 |
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