| Public consultations, public hearings, advocacy events, national and international forums. | 암
> 암: 기타 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 규제 기관과의 협력 | 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]. | 신경근
> 근이영양증 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 규제 기관과의 협력 | 5,000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | 출혈
> 혈우병 | 규제 파트너십
> 규제 기관과의 협력 | 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]. | 호흡기
> 천식 및 COPD | 규제 파트너십
> 규제 기관과의 협력 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 규제 기관과의 협력 | 10,000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | 출혈
> 출혈 장애: 대부분의 유형 | 규제 파트너십
> 규제 기관과의 협력 | 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]. | 암
> 암: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 암
> 암: 기타 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 10,000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 암
> 암: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 신경근
> 근이영양증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 암
> 암: 혈액 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 호흡기
> 호흡기: 대부분의 상태 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 시각 장애
> 시각 장애 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 내분비
> 성장 장애 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 호흡기
> 천식 및 COPD | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 만성
> 만성 질환 일반 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 만성
> 만성 질환 일반 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 내분비
> 성장 장애 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 마케팅 허가 제출에 기여 | 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]. | 암
> 암: 기타 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 5,000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 출혈
> 혈우병 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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; | 신경학적
> 다발성 경화증 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | 만성
> 만성 질환 일반 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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]. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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]. | 암
> 암: 대부분의 유형 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 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]. | 암
> 암: 대부분의 유형 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 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]. | 신경근
> 근이영양증 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 100,000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 출혈
> 혈우병 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 1,000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 5,000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 류마티스성
> 류마티스 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 1,000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 내분비
> 성장 장애 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 1,000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | 암
> 암: 기타 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 10,000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | 암
> 암: 부인과 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 1,000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | 신경퇴행성
> 알츠하이머 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 신경근
> 척수성 근위축증(SMA) | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 5,000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | 장애
> 장애: 청소년 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 1,000 | National | Regularly | 119047401612 |
| Public hearings. | 암
> 암: 유방 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 암
> 암: 유방 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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]. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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]. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 5,000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | 만성
> 만성 질환 일반 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 5,000 | National | Regularly | 119074863856 |
| By participating in public consultations. | 출혈
> 출혈 장애: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 1,000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | 암
> 암: 유방 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | 류마티스성
> 루푸스 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | 암
> 암: 혈액 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 내분비
> 성장 장애 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 1,000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 신경근
> 척수성 근위축증(SMA) | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 출혈
> 혈우병 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 1,000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 100,000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 내분비
> 성장 장애 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 5,000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 환자 보호 법안 및 권리 옹호 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | 신경퇴행성
> 알츠하이머 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 5,000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 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. | 출혈
> 혈우병 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 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. | 신경학적
> 다발성 경화증 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 100,000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 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. | 류마티스성
> 루푸스 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 10,000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 일반 건강
> 공중 보건 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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]. | 희귀
> 희귀 질환: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 10,000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 일반 건강
> 공중 보건 | 가격 책정 및 affordability 옹호
> 저소득층 및 취약계층의 비용 장벽 해소 | 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. | 혈액
> 겸상 적혈구 질환 | 가격 책정 및 affordability 옹호
> 의약품 가격/의약품 부족 현황 추적 및 모니터링 | 5,000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | 가격 책정 및 affordability 옹호
> 의약품 가격/의약품 부족 현황 추적 및 모니터링 | 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. | 신경학적
> 다발성 경화증 | 가격 책정 및 affordability 옹호
> 의약품 가격/의약품 부족 현황 추적 및 모니터링 | 10,000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | 희귀
> 희귀 질환: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 제품 대체 모니터링 | 10,000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | 신경퇴행성
> 알츠하이머 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 5,000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | 시각 장애
> 시각 장애 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 1,000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | 신경근
> 척수성 근위축증(SMA) | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 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]. | 신경학적
> 다발성 경화증 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | 일반 건강
> 공중 보건 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 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]. | 암
> 암: 유방 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 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]. | 신경학적
> 다발성 경화증 | 가격 책정 및 affordability 옹호
> 인식 제고 캠페인 참여 | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | 신경학적
> 다발성 경화증 | 가격 책정 및 affordability 옹호
> 인식 제고 캠페인 참여 | 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. | 신경근
> 중증 근무력증 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 1,000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | 출혈
> 혈우병 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 혈액
> 겸상 적혈구 질환 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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]. | 신경학적
> 다발성 경화증 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 신경학적
> 다발성 경화증 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 류마티스성
> 류마티스 질환: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 10,000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 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. | 혈액
> 겸상 적혈구 질환 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 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. | 신경근
> 척수성 근위축증(SMA) | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | 신경근
> 척수성 근위축증(SMA) | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 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]. | 시각 장애
> 시각 장애 | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 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. | 신경학적
> 다발성 경화증 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 신경근
> 근이영양증 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 신경근
> 근이영양증 | 근거 기반 환자 의견
> 규제 기관에 실제 근거(RWE) 제공 | 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. | 암
> 암: 대부분의 유형 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 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. | 내분비
> 성장 장애 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 1,000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | 내분비
> 성장 장애 | 근거 기반 환자 의견
> 데이터 생성을 위한 설문조사/연구 수행 | 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. | 신경학적
> 다발성 경화증 | 근거 기반 환자 의견
> 증거와 인사이트를 정책 입력으로 전환 | 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. | 내분비
> 성장 장애 | 근거 기반 환자 의견
> 증거와 인사이트를 정책 입력으로 전환 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 진단 및 의약품 배달
> 검진 및 조기 발견 지원 | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | 희귀
> 희귀 질환: 대부분의 유형 | 진단 및 의약품 배달
> 검진 및 조기 발견 지원 | 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]. | 암
> 암: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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]. | 암
> 암: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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]. | 내분비
> 당뇨병(1형 및 2형 모두) | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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]. | 신경근
> 근이영양증 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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]. | 암
> 암: 혈액 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 10,000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | 암
> 암: 유방 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | 출혈
> 혈우병 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 신경학적
> 다발성 경화증 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 신경학적
> 다발성 경화증 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 100,000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | 만성
> 만성 질환 일반 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 만성
> 만성 질환 일반 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 1,000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | 암
> 암: 혈액 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 1,000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 10,000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | 출혈
> 출혈 장애: 대부분의 유형 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 100,000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | 류마티스성
> 류마티스 질환: 대부분의 유형 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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]. | 암
> 암: 혈액 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 10,000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | 장애
> 장애: 청소년 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 신경학적
> 다발성 경화증 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 신경학적
> 다발성 경화증 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 10,000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | 내분비
> 성장 장애 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 내분비
> 성장 장애 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 류마티스성
> 류마티스 질환: 대부분의 유형 | 환자 권리 보호/삶의 질 향상
> 환자 경험 보호/개선 | 1,000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | 희귀
> 희귀 질환: 대사/리소좀 | 환자 권리 보호/삶의 질 향상
> 환자 경험 보호/개선 | 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]. | 시각 장애
> 시각 장애 | 환자 권리 보호/삶의 질 향상
> 치료 관련 법적 조치 지원 | 1,000 | National | Regularly | 119065385473 |
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