PatientView | 来自患者组织的巴西洞察：定价谈判桌上的一席之地

患者群体目标

以下百分比突出显示了73个患者群体如何与监管机构互动并倡导患者利益。由于受访者可能在多个领域有所代表，百分比总和可能不等于100%。

互动

患者群体如何与药品监管机构互动

了解目标的含义

43 提及

27 提及

24 提及

7 提及

行动与倡导

患者群体如何获得药物

了解目标的含义

18 提及

16 提及

14 提及

3 提及

2 提及

1 提及

英文文本	治疗领域	类别	已触达患者	地理覆盖范围	监管参与	受访者
Public consultations, public hearings, advocacy events, national and international forums.	癌症 > 癌症：其他	监管合作伙伴关系 > 与监管机构合作	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 与监管机构合作	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].	神经肌肉 > 肌营养不良症	监管合作伙伴关系 > 与监管机构合作	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.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 与监管机构合作	5,000	National	Regularly	119046302524
Participation in advisory councils, forums, and public manifestos.	出血 > 血友病	监管合作伙伴关系 > 与监管机构合作	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].	呼吸系统 > 哮喘和慢性阻塞性肺病	监管合作伙伴关系 > 与监管机构合作	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.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 与监管机构合作	10,000	Regional	Sometimes	119077778824
We engage with government bodies in forums where matters relating to our cause are discussed.	出血 > 出血性疾病：大多数类型	监管合作伙伴关系 > 与监管机构合作	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].	癌症 > 癌症：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	癌症 > 癌症：其他	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	10,000	National	Sometimes	119017268057
CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation].	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	癌症 > 癌症：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	神经肌肉 > 肌营养不良症	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	癌症 > 癌症：血液	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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 > 出血性疾病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	呼吸系统 > 呼吸系统：大多数疾病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	视觉障碍 > 视觉障碍	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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 > 生长障碍	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	呼吸系统 > 哮喘和慢性阻塞性肺病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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 > 慢性病（总体）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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 > 慢性病（总体）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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].	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	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 > 生长障碍	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	National	Regularly	119078211127
We support the registration of medicines.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 为营销授权申报做出贡献	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].	癌症 > 癌症：其他	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	National	Regularly	119042861822
Direct meetings with the division of the Ministry of Health responsible for rare disease care.	神经肌肉 > 脊髓性肌萎缩症（SMA）	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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 > 出血性疾病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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;	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Regularly	119074690047
… Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies.	慢性 > 慢性病（总体）	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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].	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	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].	癌症 > 癌症：大多数类型	监管合作伙伴关系 > 与其他医疗保健倡导者	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].	癌症 > 癌症：大多数类型	监管合作伙伴关系 > 与其他医疗保健倡导者	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].	神经肌肉 > 肌营养不良症	监管合作伙伴关系 > 与其他医疗保健倡导者	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.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 与其他医疗保健倡导者	100,000	National	Regularly	119073437945
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	稀有 > 罕见病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	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	影响政策和立法 > 影响医疗保健政策和立法	1,000	Regional	Regularly	119052656211
We advocate for public policies, access, treatment, updates, and so forth.	稀有 > 罕见病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	5,000	National	Regularly	119055145819
We work alongside legislators to drive improvements and advance bills that serve the interests of patients.	稀有 > 罕见病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	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.	神经系统 > 多发性硬化症	影响政策和立法 > 影响医疗保健政策和立法	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.	风湿性 > 风湿性疾病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	1,000	Local	Sometimes	119074685227
… Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies.	神经系统 > 多发性硬化症	影响政策和立法 > 影响医疗保健政策和立法	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	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 > 生长障碍	影响政策和立法 > 影响医疗保健政策和立法	1,000	National	Regularly	119078211127
Public consultations; public hearings.	癌症 > 癌症：其他	影响政策和立法 > 参与公众听证会和咨询	10,000	National	Sometimes	119017268057
Through mobilisation efforts and active participation in public calls, public consultations, and public hearings.	癌症 > 癌症：妇科	影响政策和立法 > 参与公众听证会和咨询	1,000	National	Regularly	119021190367
Participating in the development of public policies and in meetings concerning the incorporation of medicines.	神经退行性 > 阿尔茨海默症	影响政策和立法 > 参与公众听证会和咨询	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Regularly	119042861822
Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations.	残疾 > 残疾：青少年	影响政策和立法 > 参与公众听证会和咨询	1,000	National	Regularly	119047401612
Public hearings.	癌症 > 癌症：乳腺癌	影响政策和立法 > 参与公众听证会和咨询	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.	癌症 > 癌症：乳腺癌	影响政策和立法 > 参与公众听证会和咨询	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].	神经系统 > 多发性硬化症	影响政策和立法 > 参与公众听证会和咨询	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.	神经系统 > 多发性硬化症	影响政策和立法 > 参与公众听证会和咨询	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.	神经系统 > 多发性硬化症	影响政策和立法 > 参与公众听证会和咨询	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.	神经系统 > 多发性硬化症	影响政策和立法 > 参与公众听证会和咨询	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].	神经系统 > 多发性硬化症	影响政策和立法 > 参与公众听证会和咨询	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Regularly	119074846445
Public hearings and meetings with health secretariats.	慢性 > 慢性病（总体）	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Regularly	119074863856
By participating in public consultations.	出血 > 出血性疾病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	1,000	Regional	Sometimes	119077025336
Through advocacy activities, public consultations, public hearings, and social media.	癌症 > 癌症：乳腺癌	影响政策和立法 > 参与公众听证会和咨询	100	National	Regularly	119077684629
We have participated as speakers at public hearings on disease treatment.	风湿性 > 狼疮	影响政策和立法 > 参与公众听证会和咨询	100	National	Regularly	119077822580
... We are actively engaged in public consultations [in Brazil] in the interests of patients.	癌症 > 癌症：血液	影响政策和立法 > 参与公众听证会和咨询	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 > 生长障碍	影响政策和立法 > 参与公众听证会和咨询	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	1,000	National	Regularly	119078307187
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	稀有 > 罕见病：大多数类型	影响政策和立法 > 动员议员和政治领导人	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	影响政策和立法 > 动员议员和政治领导人	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	影响政策和立法 > 动员议员和政治领导人	1,000	Regional	Regularly	119052656211
We work alongside legislators to drive improvements and advance bills that serve the interests of patients.	稀有 > 罕见病：大多数类型	影响政策和立法 > 动员议员和政治领导人	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.	神经系统 > 多发性硬化症	影响政策和立法 > 动员议员和政治领导人	100,000	National	Regularly	119074690047
… and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation.	稀有 > 罕见病：大多数类型	影响政策和立法 > 动员议员和政治领导人	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 > 生长障碍	影响政策和立法 > 动员议员和政治领导人	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 动员议员和政治领导人	5,000	National	Regularly	119078218520
Public policies pertaining to patient rights.	神经系统 > 多发性硬化症	影响政策和立法 > 倡导患者保护法案和权利	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.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与起草公共卫生法规	100	National	Regularly	119012383199
By participating in the development of public policies.	神经退行性 > 阿尔茨海默症	影响政策和立法 > 参与起草公共卫生法规	5,000	National	Regularly	119037286447
Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与起草公共卫生法规	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	影响政策和立法 > 参与起草公共卫生法规	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.	神经系统 > 多发性硬化症	影响政策和立法 > 参与起草公共卫生法规	100,000	National	Regularly	119073437945
… and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与起草公共卫生法规	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.	风湿性 > 狼疮	影响政策和立法 > 参与起草公共卫生法规	100	National	Regularly	119077822580
We have already approached manufacturers seeking a social pricing scheme, without success.	HIV > HIV	定价与可负担性倡导 > 倡导公平的药品定价	10,000	Local	Sometimes	119072634823
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	总体健康 > 公共卫生	定价与可负担性倡导 > 倡导公平的药品定价	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].	稀有 > 罕见病：大多数类型	定价与可负担性倡导 > 倡导公平的药品定价	10,000	National	Rarely	119078192576
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	总体健康 > 公共卫生	定价与可负担性倡导 > 解决低收入和弱势群体面临的费用障碍	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 > 镰状细胞病	定价与可负担性倡导 > 跟踪和监控药品定价/药品短缺	5,000	National	Regularly	119069254783
We have already approached manufacturers seeking a social pricing scheme, without success.	HIV > HIV	定价与可负担性倡导 > 跟踪和监控药品定价/药品短缺	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.	神经系统 > 多发性硬化症	定价与可负担性倡导 > 跟踪和监控药品定价/药品短缺	10,000	National	Regularly	119073066358
We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil].	稀有 > 罕见病：大多数类型	定价与可负担性倡导 > 监控产品替换	10,000	National	Rarely	119078192576
Participating in the development of public policies and in meetings concerning the incorporation of medicines.	神经退行性 > 阿尔茨海默症	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	5,000	National	Regularly	119037286447
Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System].	视觉障碍 > 视觉障碍	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	1,000	National	Regularly	119065385473
Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy].	神经肌肉 > 脊髓性肌萎缩症（SMA）	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	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].	神经系统 > 多发性硬化症	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	Not specified	Local	Regularly	119072244093
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	总体健康 > 公共卫生	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	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].	癌症 > 癌症：乳腺癌	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	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].	神经系统 > 多发性硬化症	定价与可负担性倡导 > 参与宣传活动	Not specified	Local	Regularly	119072244093
Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing].	神经系统 > 多发性硬化症	定价与可负担性倡导 > 参与宣传活动	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.	神经肌肉 > 重症肌无力	改善访问路径 > 促进公平获取药品/医疗保健	1,000	National	Rarely	119020326698
Regarding access to treatments and medicines.	出血 > 血友病	改善访问路径 > 促进公平获取药品/医疗保健	100	Local	Regularly	119050022800
We advocate for public policies, access, treatment, updates, and so forth.	稀有 > 罕见病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	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 > 镰状细胞病	改善访问路径 > 促进公平获取药品/医疗保健	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].	神经系统 > 多发性硬化症	改善访问路径 > 促进公平获取药品/医疗保健	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.	神经系统 > 多发性硬化症	改善访问路径 > 促进公平获取药品/医疗保健	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.	风湿性 > 风湿性疾病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	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.	稀有 > 罕见病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	10,000	Regional	Sometimes	119077778824
We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil].	稀有 > 罕见病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	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.	稀有 > 罕见病：大多数类型	改善访问路径 > 解决访问和管理方面的差距	100	National	Regularly	119012383199
Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021.	稀有 > 罕见病：大多数类型	改善访问路径 > 解决访问和管理方面的差距	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 > 镰状细胞病	改善访问路径 > 解决访问和管理方面的差距	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.	神经肌肉 > 脊髓性肌萎缩症（SMA）	改善访问路径 > 改善罕见/超罕见疗法的获取途径	100	National	Regularly	119051551373
Direct meetings with the division of the Ministry of Health responsible for rare disease care.	神经肌肉 > 脊髓性肌萎缩症（SMA）	改善访问路径 > 改善罕见/超罕见疗法的获取途径	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].	视觉障碍 > 视觉障碍	改善访问路径 > 改善罕见/超罕见疗法的获取途径	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.	神经系统 > 多发性硬化症	循证患者意见 > 利用患者洞察来指导决策	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.	神经肌肉 > 肌营养不良症	循证患者意见 > 利用患者洞察来指导决策	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.	神经肌肉 > 肌营养不良症	循证患者意见 > 向监管机构提供真实世界证据（RWE）	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.	癌症 > 癌症：大多数类型	循证患者意见 > 利用患者故事和亲身经历叙述	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 > 生长障碍	循证患者意见 > 利用患者故事和亲身经历叙述	1,000	National	Regularly	119078211127
Participation in scientific medical congresses and research.	内分泌 > 生长障碍	循证患者意见 > 开展调查/研究以生成数据	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.	神经系统 > 多发性硬化症	循证患者意见 > 将证据和洞察转化为政策建议	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 > 生长障碍	循证患者意见 > 将证据和洞察转化为政策建议	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.	稀有 > 罕见病：大多数类型	诊断与药品配送 > 支持筛查和早期检测	100	National	Regularly	119012383199
Implementation of newborn screening in the state of Paraná.	稀有 > 罕见病：大多数类型	诊断与药品配送 > 支持筛查和早期检测	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].	癌症 > 癌症：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	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].	癌症 > 癌症：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	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型和2型）	机构治理 > 确保在政府咨询机构中的代表性	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].	神经肌肉 > 肌营养不良症	机构治理 > 确保在政府咨询机构中的代表性	100	Regional	Regularly	119045134485
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	稀有 > 罕见病：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	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].	癌症 > 癌症：血液	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Regularly	119046062542
We are members of the State Advocacy Commission.	癌症 > 癌症：乳腺癌	机构治理 > 确保在政府咨询机构中的代表性	100	Local	Regularly	119052625607
Participation in advisory councils, forums, and public manifestos.	出血 > 血友病	机构治理 > 确保在政府咨询机构中的代表性	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.	神经系统 > 多发性硬化症	机构治理 > 确保在政府咨询机构中的代表性	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.	神经系统 > 多发性硬化症	机构治理 > 确保在政府咨询机构中的代表性	100,000	National	Regularly	119073437945
… To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council].	慢性 > 慢性病（总体）	机构治理 > 确保在政府咨询机构中的代表性	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 > 慢性病（总体）	机构治理 > 确保在政府咨询机构中的代表性	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	机构治理 > 确保在政府咨询机构中的代表性	1,000	National	Regularly	119074698753
Yes, we hold seats on health councils and health agencies.	癌症 > 癌症：血液	机构治理 > 确保在政府咨询机构中的代表性	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.	稀有 > 罕见病：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	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.	稀有 > 罕见病：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	1,000	National	Regularly	119078307187
The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council].	稀有 > 罕见病：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Regularly	119078420142
We engage with government bodies in forums where matters relating to our cause are discussed.	出血 > 出血性疾病：大多数类型	机构治理 > 确保在政府咨询机构中的代表性	100,000	National	Regularly	119083316815
Meetings with organisations operating at the same level.	风湿性 > 风湿性疾病：大多数类型	机构治理 > 在多利益相关方网络中高效协作	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].	癌症 > 癌症：血液	机构治理 > 在多利益相关方网络中高效协作	10,000	National	Regularly	119046062542
Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations.	残疾 > 残疾：青少年	机构治理 > 在多利益相关方网络中高效协作	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.	神经系统 > 多发性硬化症	机构治理 > 在多利益相关方网络中高效协作	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.	神经系统 > 多发性硬化症	机构治理 > 在多利益相关方网络中高效协作	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	机构治理 > 在多利益相关方网络中高效协作	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.	稀有 > 罕见病：大多数类型	机构治理 > 在多利益相关方网络中高效协作	10,000	Regional	Sometimes	119077778824
Participation in scientific medical congresses and research.	内分泌 > 生长障碍	机构治理 > 在多利益相关方网络中高效协作	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 > 生长障碍	机构治理 > 在多利益相关方网络中高效协作	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.	风湿性 > 风湿性疾病：大多数类型	维护患者权益/提高生活质量 > 保护/改善患者体验	1,000	Local	Sometimes	119074685227
Educating patients on how to assert their rights when necessary.	稀有 > 罕见病：代谢/溶酶体	维护患者权益/提高生活质量 > 保护/改善患者体验	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].	视觉障碍 > 视觉障碍	维护患者权益/提高生活质量 > 支持与治疗相关的法律行动	1,000	National	Regularly	119065385473

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