| Public consultations, public hearings, advocacy events, national and international forums. | Рак
> Рак: другое | Регуляторное партнёрство
> Работа с регулирующими органами | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Работа с регулирующими органами | 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]. | Нервно-мышечный
> Мышечная дистрофия | Регуляторное партнёрство
> Работа с регулирующими органами | 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. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Работа с регулирующими органами | 5 000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Кровотечение
> Гемофилия | Регуляторное партнёрство
> Работа с регулирующими органами | 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]. | Дыхательная система
> Астма и ХОБЛ | Регуляторное партнёрство
> Работа с регулирующими органами | 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. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Работа с регулирующими органами | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Кровотечение
> Нарушения свёртываемости крови: большинство типов | Регуляторное партнёрство
> Работа с регулирующими органами | 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]. | Рак
> Рак: большинство видов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Рак
> Рак: другое | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Рак
> Рак: большинство видов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Нервно-мышечный
> Мышечная дистрофия | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Рак
> Рак: кровь | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Кровотечение
> Нарушения свёртываемости крови: большинство типов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Дыхательная система
> Дыхательная система: большинство состояний | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Нарушение зрения
> Нарушение зрения | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | ВИЧ
> ВИЧ | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Эндокринная
> Нарушения роста | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Дыхательная система
> Астма и ХОБЛ | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Хроническое
> Хронические заболевания в целом | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Хроническое
> Хронические заболевания в целом | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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]. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 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. | Эндокринная
> Нарушения роста | Регуляторное партнёрство
> Участвовать в оценке медицинских технологий (HTA) и проверках возмещения расходов | 1 000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Вносить вклад в подачу заявок на получение разрешения на маркетинг | 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]. | Рак
> Рак: другое | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 5 000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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. | Кровотечение
> Гемофилия | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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. | Кровотечение
> Нарушения свёртываемости крови: большинство типов | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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; | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Хроническое
> Хронические заболевания в целом | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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]. | Редкий
> Редкие болезни: большинство типов | Регуляторное партнёрство
> Участвовать/проводить встречи с политиками/регуляторами | 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]. | Рак
> Рак: большинство видов | Регуляторное партнёрство
> С другими защитниками здравоохранения | 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]. | Рак
> Рак: большинство видов | Регуляторное партнёрство
> С другими защитниками здравоохранения | 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]. | Нервно-мышечный
> Мышечная дистрофия | Регуляторное партнёрство
> С другими защитниками здравоохранения | 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. | Неврологический
> Рассеянный склероз | Регуляторное партнёрство
> С другими защитниками здравоохранения | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 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. | Кровотечение
> Гемофилия | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 1 000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 5 000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 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. | Ревматический
> Ревматические заболевания: большинство видов | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 1 000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 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. | Эндокринная
> Нарушения роста | Влияние на политику и законодательство
> Влияние на политику и законодательство в сфере здравоохранения | 1 000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Рак
> Рак: другое | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Рак
> Рак: гинекологический | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 1 000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Нейродегенеративные
> Болезнь Альцгеймера | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 5 000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Инвалидность
> Инвалидность: молодёжь | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 1 000 | National | Regularly | 119047401612 |
| Public hearings. | Рак
> Рак: молочная железа | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Рак
> Рак: молочная железа | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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]. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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]. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 5 000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Хроническое
> Хронические заболевания в целом | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 5 000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Кровотечение
> Нарушения свёртываемости крови: большинство типов | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 1 000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Рак
> Рак: молочная железа | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Ревматический
> Волчанка | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Рак
> Рак: кровь | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Эндокринная
> Нарушения роста | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в публичных слушаниях и консультациях | 1 000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 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. | Кровотечение
> Гемофилия | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 1 000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 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. | Эндокринная
> Нарушения роста | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Мобилизовать парламентариев и политических лидеров | 5 000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Выступать за законопроекты и права по защите пациентов | 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. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Нейродегенеративные
> Болезнь Альцгеймера | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 5 000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 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. | Кровотечение
> Гемофилия | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 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. | Неврологический
> Рассеянный склероз | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Редкий
> Редкие болезни: большинство типов | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 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. | Ревматический
> Волчанка | Влияние на политику и законодательство
> Участвовать в разработке законодательства в области общественного здравоохранения | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | ВИЧ
> ВИЧ | Пропаганда доступного ценообразования
> Выступать за справедливое ценообразование на лекарства | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Общее состояние здоровья
> Общественное здравоохранение | Пропаганда доступного ценообразования
> Выступать за справедливое ценообразование на лекарства | 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]. | Редкий
> Редкие болезни: большинство типов | Пропаганда доступного ценообразования
> Выступать за справедливое ценообразование на лекарства | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Общее состояние здоровья
> Общественное здравоохранение | Пропаганда доступного ценообразования
> Устранение ценовых барьеров для малообеспеченных и уязвимых групп населения | 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. | Кровь
> Серповидноклеточная анемия | Пропаганда доступного ценообразования
> Отслеживание и мониторинг цен на лекарства/дефицита лекарств | 5 000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | ВИЧ
> ВИЧ | Пропаганда доступного ценообразования
> Отслеживание и мониторинг цен на лекарства/дефицита лекарств | 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. | Неврологический
> Рассеянный склероз | Пропаганда доступного ценообразования
> Отслеживание и мониторинг цен на лекарства/дефицита лекарств | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Редкий
> Редкие болезни: большинство типов | Пропаганда доступного ценообразования
> Мониторинг замены продукта | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Нейродегенеративные
> Болезнь Альцгеймера | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | 5 000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Нарушение зрения
> Нарушение зрения | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | 1 000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | 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]. | Неврологический
> Рассеянный склероз | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Общее состояние здоровья
> Общественное здравоохранение | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | 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]. | Рак
> Рак: молочная железа | Пропаганда доступного ценообразования
> Отстаивание включения продукта в списки возмещения/национальные формуляры | 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]. | Неврологический
> Рассеянный склероз | Пропаганда доступного ценообразования
> Участие в информационно-просветительских кампаниях | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Неврологический
> Рассеянный склероз | Пропаганда доступного ценообразования
> Участие в информационно-просветительских кампаниях | 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. | Нервно-мышечный
> Миастения гравис | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 1 000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Кровотечение
> Гемофилия | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Редкий
> Редкие болезни: большинство типов | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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. | Кровь
> Серповидноклеточная анемия | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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]. | Неврологический
> Рассеянный склероз | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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. | Неврологический
> Рассеянный склероз | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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. | Ревматический
> Ревматические заболевания: большинство видов | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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. | Редкий
> Редкие болезни: большинство типов | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Редкий
> Редкие болезни: большинство типов | Улучшение путей доступа
> Обеспечение равного доступа к лекарствам/медицинской помощи | 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. | Редкий
> Редкие болезни: большинство типов | Улучшение путей доступа
> Устранение неравенства в доступе и управлении | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Редкий
> Редкие болезни: большинство типов | Улучшение путей доступа
> Устранение неравенства в доступе и управлении | 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. | Кровь
> Серповидноклеточная анемия | Улучшение путей доступа
> Устранение неравенства в доступе и управлении | 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. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Улучшение путей доступа
> Улучшение доступа к редким/ультраредким методам лечения | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Нервно-мышечный
> Спинальная мышечная атрофия (СМА) | Улучшение путей доступа
> Улучшение доступа к редким/ультраредким методам лечения | 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]. | Нарушение зрения
> Нарушение зрения | Улучшение путей доступа
> Улучшение доступа к редким/ультраредким методам лечения | 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. | Неврологический
> Рассеянный склероз | Доказательный вклад пациента
> Используйте данные о пациентах для принятия решений | 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. | Нервно-мышечный
> Мышечная дистрофия | Доказательный вклад пациента
> Используйте данные о пациентах для принятия решений | 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. | Нервно-мышечный
> Мышечная дистрофия | Доказательный вклад пациента
> Предоставление реальных доказательств (RWE) регуляторным органам | 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. | Рак
> Рак: большинство видов | Доказательный вклад пациента
> Используйте истории пациентов и нарративы на основе личного опыта | 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. | Эндокринная
> Нарушения роста | Доказательный вклад пациента
> Используйте истории пациентов и нарративы на основе личного опыта | 1 000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Эндокринная
> Нарушения роста | Доказательный вклад пациента
> Проводить опросы/исследования для получения данных | 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. | Неврологический
> Рассеянный склероз | Доказательный вклад пациента
> Переводите доказательства и аналитические данные в политические рекомендации | 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. | Эндокринная
> Нарушения роста | Доказательный вклад пациента
> Переводите доказательства и аналитические данные в политические рекомендации | 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. | Редкий
> Редкие болезни: большинство типов | Диагностика и доставка лекарств
> Поддержка скрининга и раннего выявления | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Редкий
> Редкие болезни: большинство типов | Диагностика и доставка лекарств
> Поддержка скрининга и раннего выявления | 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]. | Рак
> Рак: большинство видов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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]. | Рак
> Рак: большинство видов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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]. | Эндокринная
> Диабет (оба типа: 1 и 2) | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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]. | Нервно-мышечный
> Мышечная дистрофия | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Редкий
> Редкие болезни: большинство типов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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]. | Рак
> Рак: кровь | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Рак
> Рак: молочная железа | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Кровотечение
> Гемофилия | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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. | Неврологический
> Рассеянный склероз | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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. | Неврологический
> Рассеянный склероз | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Хроническое
> Хронические заболевания в целом | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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. | Хроническое
> Хронические заболевания в целом | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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]. | ВИЧ
> ВИЧ | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 1 000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Рак
> Рак: кровь | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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. | Редкий
> Редкие болезни: большинство типов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 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. | Редкий
> Редкие болезни: большинство типов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 1 000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Редкий
> Редкие болезни: большинство типов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Кровотечение
> Нарушения свёртываемости крови: большинство типов | Институциональное управление
> Обеспечить представительство в государственных консультативных органах | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Ревматический
> Ревматические заболевания: большинство видов | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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]. | Рак
> Рак: кровь | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Инвалидность
> Инвалидность: молодёжь | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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. | Неврологический
> Рассеянный склероз | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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. | Неврологический
> Рассеянный склероз | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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]. | ВИЧ
> ВИЧ | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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. | Редкий
> Редкие болезни: большинство типов | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Эндокринная
> Нарушения роста | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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. | Эндокринная
> Нарушения роста | Институциональное управление
> Эффективная работа в многосторонних сетях заинтересованных сторон | 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. | Ревматический
> Ревматические заболевания: большинство видов | Соблюдение прав пациентов/улучшение качества жизни
> Защита/улучшение опыта пациента | 1 000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Редкий
> Редкие заболевания: метаболические/лизосомальные | Соблюдение прав пациентов/улучшение качества жизни
> Защита/улучшение опыта пациента | 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]. | Нарушение зрения
> Нарушение зрения | Соблюдение прав пациентов/улучшение качества жизни
> Поддержка в юридических вопросах, связанных с лечением | 1 000 | National | Regularly | 119065385473 |
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43 упоминания
