| Public consultations, public hearings, advocacy events, national and international forums. | がん
> がん：その他 | 規制上のパートナーシップ
> 規制機関との連携 | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 規制機関との連携 | 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]. | 神経筋
> 筋ジストロフィー | 規制上のパートナーシップ
> 規制機関との連携 | 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. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 規制機関との連携 | 5,000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | 出血
> 血友病 | 規制上のパートナーシップ
> 規制機関との連携 | 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]. | 呼吸器
> 喘息とCOPD | 規制上のパートナーシップ
> 規制機関との連携 | 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. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 規制機関との連携 | 10,000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | 出血
> 出血性疾患：ほとんどの種類 | 規制上のパートナーシップ
> 規制機関との連携 | 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]. | がん
> がん：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | がん
> がん：その他 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 10,000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | がん
> がん：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | 神経筋
> 筋ジストロフィー | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | がん
> がん：血液 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 出血
> 出血性疾患：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 呼吸器
> 呼吸器：ほとんどの状態 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 視覚障害
> 視覚障害 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | 内分泌
> 成長障害 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | 呼吸器
> 喘息とCOPD | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | 慢性
> 慢性疾患全般 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 慢性
> 慢性疾患全般 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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]. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 内分泌
> 成長障害 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 1,000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> マーケティング承認申請への貢献 | 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]. | がん
> がん：その他 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 5,000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | 神経筋
> 脊髄性筋萎縮症（SMA） | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 出血
> 血友病 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 出血
> 出血性疾患：ほとんどの種類 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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; | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | 慢性
> 慢性疾患全般 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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]. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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]. | がん
> がん：ほとんどの種類 | 規制上のパートナーシップ
> 他の医療擁護者と | 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]. | がん
> がん：ほとんどの種類 | 規制上のパートナーシップ
> 他の医療擁護者と | 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]. | 神経筋
> 筋ジストロフィー | 規制上のパートナーシップ
> 他の医療擁護者と | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 他の医療擁護者と | 100,000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 出血
> 血友病 | 政策と法律への影響
> 医療政策と法律に影響を与える | 1,000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 5,000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | リウマチ性
> リウマチ性疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 1,000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 内分泌
> 成長障害 | 政策と法律への影響
> 医療政策と法律に影響を与える | 1,000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | がん
> がん：その他 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 10,000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | がん
> がん：婦人科系 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 1,000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | 神経変性
> アルツハイマー病 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 5,000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | 障害
> 障害：若者 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 1,000 | National | Regularly | 119047401612 |
| Public hearings. | がん
> がん：乳房 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | がん
> がん：乳房 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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]. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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]. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 5,000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | 慢性
> 慢性疾患全般 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 5,000 | National | Regularly | 119074863856 |
| By participating in public consultations. | 出血
> 出血性疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 1,000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | がん
> がん：乳房 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | リウマチ性
> 全身性エリテマトーデス | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | がん
> がん：血液 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 内分泌
> 成長障害 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 1,000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | 出血
> 血友病 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 1,000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 100,000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | 内分泌
> 成長障害 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 5,000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 患者保護法案と権利のための擁護活動 | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | 神経変性
> アルツハイマー病 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 5,000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 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. | 出血
> 血友病 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 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. | 神経学的
> 多発性硬化症 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 100,000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 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. | リウマチ性
> 全身性エリテマトーデス | 政策と法律への影響
> 公衆衛生法の立案に貢献する | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 10,000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 全般的な健康状態
> 公衆衛生 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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]. | レア
> 希少疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 10,000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 全般的な健康状態
> 公衆衛生 | 価格設定と手頃な価格の擁護
> 低所得者や脆弱な立場にある人々のコスト面での障壁に対処する | 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. | 血液
> 鎌状赤血球症 | 価格設定と手頃な価格の擁護
> 薬価の追跡・監視/医薬品不足 | 5,000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | 価格設定と手頃な価格の擁護
> 薬価の追跡・監視/医薬品不足 | 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. | 神経学的
> 多発性硬化症 | 価格設定と手頃な価格の擁護
> 薬価の追跡・監視/医薬品不足 | 10,000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | レア
> 希少疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 製品代替のモニタリング | 10,000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | 神経変性
> アルツハイマー病 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 5,000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | 視覚障害
> 視覚障害 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 1,000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | 神経筋
> 脊髄性筋萎縮症（SMA） | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 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]. | 神経学的
> 多発性硬化症 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 全般的な健康状態
> 公衆衛生 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 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]. | がん
> がん：乳房 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 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]. | 神経学的
> 多発性硬化症 | 価格設定と手頃な価格の擁護
> 啓発キャンペーンへの参加 | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | 神経学的
> 多発性硬化症 | 価格設定と手頃な価格の擁護
> 啓発キャンペーンへの参加 | 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. | 神経筋
> 重症筋無力症 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 1,000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | 出血
> 血友病 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 血液
> 鎌状赤血球症 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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]. | 神経学的
> 多発性硬化症 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 神経学的
> 多発性硬化症 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | リウマチ性
> リウマチ性疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 10,000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> アクセスと管理における格差への対処 | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> アクセスと管理における格差への対処 | 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. | 血液
> 鎌状赤血球症 | アクセス経路の改善
> アクセスと管理における格差への対処 | 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. | 神経筋
> 脊髄性筋萎縮症（SMA） | アクセス経路の改善
> 希少・超希少疾患治療へのアクセス改善 | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | 神経筋
> 脊髄性筋萎縮症（SMA） | アクセス経路の改善
> 希少・超希少疾患治療へのアクセス改善 | 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]. | 視覚障害
> 視覚障害 | アクセス経路の改善
> 希少・超希少疾患治療へのアクセス改善 | 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. | 神経学的
> 多発性硬化症 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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. | 神経筋
> 筋ジストロフィー | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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. | 神経筋
> 筋ジストロフィー | エビデンスに基づく患者の意見
> 規制当局にリアルワールドエビデンス（RWE）を提供する | 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. | がん
> がん：ほとんどの種類 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 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. | 内分泌
> 成長障害 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 1,000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | 内分泌
> 成長障害 | エビデンスに基づく患者の意見
> 調査/研究を実施してデータを生成する | 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. | 神経学的
> 多発性硬化症 | エビデンスに基づく患者の意見
> エビデンスとインサイトを政策インプットに変換する | 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. | 内分泌
> 成長障害 | エビデンスに基づく患者の意見
> エビデンスとインサイトを政策インプットに変換する | 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. | レア
> 希少疾患：ほとんどの種類 | 診断と薬の配達
> スクリーニングと早期発見のサポート | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | レア
> 希少疾患：ほとんどの種類 | 診断と薬の配達
> スクリーニングと早期発見のサポート | 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]. | がん
> がん：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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]. | がん
> がん：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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]. | 内分泌
> 糖尿病（1型および2型の両方） | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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]. | 神経筋
> 筋ジストロフィー | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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]. | がん
> がん：血液 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 10,000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | がん
> がん：乳房 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | 出血
> 血友病 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | 神経学的
> 多発性硬化症 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | 神経学的
> 多発性硬化症 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 100,000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | 慢性
> 慢性疾患全般 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | 慢性
> 慢性疾患全般 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 1,000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | がん
> がん：血液 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 1,000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 10,000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | 出血
> 出血性疾患：ほとんどの種類 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 100,000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | リウマチ性
> リウマチ性疾患：ほとんどの種類 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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]. | がん
> がん：血液 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 10,000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | 障害
> 障害：若者 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | 神経学的
> 多発性硬化症 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | 神経学的
> 多発性硬化症 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 10,000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | 内分泌
> 成長障害 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | 内分泌
> 成長障害 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | リウマチ性
> リウマチ性疾患：ほとんどの種類 | 患者の権利の擁護/生活の質の向上
> 患者体験の保護・改善 | 1,000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | レア
> 希少疾患：代謝性/ライソゾーム性 | 患者の権利の擁護/生活の質の向上
> 患者体験の保護・改善 | 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]. | 視覚障害
> 視覚障害 | 患者の権利の擁護/生活の質の向上
> 治療関連の法的措置におけるサポート | 1,000 | National | Regularly | 119065385473 |
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