| Public consultations, public hearings, advocacy events, national and international forums. | Syöpä
> Syöpä: muu | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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]. | Neuromuskulaarinen
> Lihasdystrofia | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 5 000 | National | Regularly | 119046302524 |
| Participation in advisory councils, forums, and public manifestos. | Verenvuoto
> Hemofilia | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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]. | Hengitys
> Astma ja COPD | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 10 000 | Regional | Sometimes | 119077778824 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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]. | Syöpä
> Syöpä: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Syöpä
> Syöpä: muu | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 10 000 | National | Sometimes | 119017268057 |
| CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Syöpä
> Syöpä: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Neuromuskulaarinen
> Lihasdystrofia | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Syöpä
> Syöpä: veri | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Hengitys
> Hengitys: useimmat tilat | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Näköhaitta
> Näköhaitta | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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 | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Endokriininen
> Kasvuhäiriöt | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Hengitys
> Astma ja COPD | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Krooninen
> Krooniset sairaudet yleisesti | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Krooninen
> Krooniset sairaudet yleisesti | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Endokriininen
> Kasvuhäiriöt | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 1 000 | National | Regularly | 119078211127 |
| We support the registration of medicines. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu myyntiluvan hakemuksiin | 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]. | Syöpä
> Syöpä: muu | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 5 000 | National | Regularly | 119042861822 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Verenvuoto
> Hemofilia | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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; | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 100 000 | National | Regularly | 119074690047 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Krooninen
> Krooniset sairaudet yleisesti | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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]. | Syöpä
> Syöpä: useimmat tyypit | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 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]. | Syöpä
> Syöpä: useimmat tyypit | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 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]. | Neuromuskulaarinen
> Lihasdystrofia | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 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. | Neurologinen
> Multippeliskleroosi | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 100 000 | National | Regularly | 119073437945 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Verenvuoto
> Hemofilia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 1 000 | Regional | Regularly | 119052656211 |
| We advocate for public policies, access, treatment, updates, and so forth. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 5 000 | National | Regularly | 119055145819 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Reumaattinen
> Reumaattiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 1 000 | Local | Sometimes | 119074685227 |
| … Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Endokriininen
> Kasvuhäiriöt | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 1 000 | National | Regularly | 119078211127 |
| Public consultations; public hearings. | Syöpä
> Syöpä: muu | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 10 000 | National | Sometimes | 119017268057 |
| Through mobilisation efforts and active participation in public calls, public consultations, and public hearings. | Syöpä
> Syöpä: gynekologinen | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 1 000 | National | Regularly | 119021190367 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneratiivinen
> Alzheimerin tauti | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 5 000 | National | Regularly | 119042861822 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Vammaisuus
> Vammaisuus: nuoret | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 1 000 | National | Regularly | 119047401612 |
| Public hearings. | Syöpä
> Syöpä: rinta | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Syöpä
> Syöpä: rinta | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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]. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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]. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 5 000 | National | Regularly | 119074846445 |
| Public hearings and meetings with health secretariats. | Krooninen
> Krooniset sairaudet yleisesti | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 5 000 | National | Regularly | 119074863856 |
| By participating in public consultations. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 1 000 | Regional | Sometimes | 119077025336 |
| Through advocacy activities, public consultations, public hearings, and social media. | Syöpä
> Syöpä: rinta | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 100 | National | Regularly | 119077684629 |
| We have participated as speakers at public hearings on disease treatment. | Reumaattinen
> Lupus | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 100 | National | Regularly | 119077822580 |
| ... We are actively engaged in public consultations [in Brazil] in the interests of patients. | Syöpä
> Syöpä: veri | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Endokriininen
> Kasvuhäiriöt | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 1 000 | National | Regularly | 119078307187 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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. | Verenvuoto
> Hemofilia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 1 000 | Regional | Regularly | 119052656211 |
| We work alongside legislators to drive improvements and advance bills that serve the interests of patients. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 100 000 | National | Regularly | 119074690047 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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. | Endokriininen
> Kasvuhäiriöt | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 5 000 | National | Regularly | 119078218520 |
| Public policies pertaining to patient rights. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Puolusta potilassuojelulakeja ja -oikeuksia | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 100 | National | Regularly | 119012383199 |
| By participating in the development of public policies. | Neurodegeneratiivinen
> Alzheimerin tauti | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 5 000 | National | Regularly | 119037286447 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 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. | Verenvuoto
> Hemofilia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 100 000 | National | Regularly | 119073437945 |
| … and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 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. | Reumaattinen
> Lupus | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 100 | National | Regularly | 119077822580 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Puolusta oikeudenmukaista lääkkeiden hinnoittelua | 10 000 | Local | Sometimes | 119072634823 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Yleinen terveys
> Kansanterveys | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Puolusta oikeudenmukaista lääkkeiden hinnoittelua | 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]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Puolusta oikeudenmukaista lääkkeiden hinnoittelua | 10 000 | National | Rarely | 119078192576 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Yleinen terveys
> Kansanterveys | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Poista kustannusesteet pienituloisilta ja haavoittuvassa asemassa olevilta ihmisiltä | 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. | Veri
> Sirppisoluanemia | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Lääkkeiden hinnoittelun/lääkepulan seuranta ja valvonta | 5 000 | National | Regularly | 119069254783 |
| We have already approached manufacturers seeking a social pricing scheme, without success. | HIV
> HIV | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Lääkkeiden hinnoittelun/lääkepulan seuranta ja valvonta | 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. | Neurologinen
> Multippeliskleroosi | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Lääkkeiden hinnoittelun/lääkepulan seuranta ja valvonta | 10 000 | National | Regularly | 119073066358 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotekorvauksen seuranta | 10 000 | National | Rarely | 119078192576 |
| Participating in the development of public policies and in meetings concerning the incorporation of medicines. | Neurodegeneratiivinen
> Alzheimerin tauti | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 5 000 | National | Regularly | 119037286447 |
| Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System]. | Näköhaitta
> Näköhaitta | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 1 000 | National | Regularly | 119065385473 |
| Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy]. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 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]. | Neurologinen
> Multippeliskleroosi | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | Not specified | Local | Regularly | 119072244093 |
| Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions. | Yleinen terveys
> Kansanterveys | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 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]. | Syöpä
> Syöpä: rinta | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 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]. | Neurologinen
> Multippeliskleroosi | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tietoisuuskampanjoihin osallistuminen | Not specified | Local | Regularly | 119072244093 |
| Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing]. | Neurologinen
> Multippeliskleroosi | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tietoisuuskampanjoihin osallistuminen | 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. | Neuromuskulaarinen
> Myasthenia gravis | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 1 000 | National | Rarely | 119020326698 |
| Regarding access to treatments and medicines. | Verenvuoto
> Hemofilia | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 100 | Local | Regularly | 119050022800 |
| We advocate for public policies, access, treatment, updates, and so forth. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Veri
> Sirppisoluanemia | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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]. | Neurologinen
> Multippeliskleroosi | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Neurologinen
> Multippeliskleroosi | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Reumaattinen
> Reumaattiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 10 000 | Regional | Sometimes | 119077778824 |
| We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Puuttua käytön ja hallinnan epätasa-arvoon | 100 | National | Regularly | 119012383199 |
| Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Parannetaan pääsyreittejä
> Puuttua käytön ja hallinnan epätasa-arvoon | 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. | Veri
> Sirppisoluanemia | Parannetaan pääsyreittejä
> Puuttua käytön ja hallinnan epätasa-arvoon | 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. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Parannetaan pääsyreittejä
> Harvinaisten/erittäin harvinaisten hoitojen saatavuuden parantaminen | 100 | National | Regularly | 119051551373 |
| Direct meetings with the division of the Ministry of Health responsible for rare disease care. | Neuromuskulaarinen
> Spinaalinen lihasatrofia (SMA) | Parannetaan pääsyreittejä
> Harvinaisten/erittäin harvinaisten hoitojen saatavuuden parantaminen | 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]. | Näköhaitta
> Näköhaitta | Parannetaan pääsyreittejä
> Harvinaisten/erittäin harvinaisten hoitojen saatavuuden parantaminen | 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. | Neurologinen
> Multippeliskleroosi | Näyttöön perustuva potilaspalaute
> Käytä potilastietoja päätöksenteon tukena | 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. | Neuromuskulaarinen
> Lihasdystrofia | Näyttöön perustuva potilaspalaute
> Käytä potilastietoja päätöksenteon tukena | 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. | Neuromuskulaarinen
> Lihasdystrofia | Näyttöön perustuva potilaspalaute
> Anna tosielämän näyttöä (RWE) viranomaisille | 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. | Syöpä
> Syöpä: useimmat tyypit | Näyttöön perustuva potilaspalaute
> Hyödynnä potilastarinoita ja kokemusperäisiä kertomuksia | 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. | Endokriininen
> Kasvuhäiriöt | Näyttöön perustuva potilaspalaute
> Hyödynnä potilastarinoita ja kokemusperäisiä kertomuksia | 1 000 | National | Regularly | 119078211127 |
| Participation in scientific medical congresses and research. | Endokriininen
> Kasvuhäiriöt | Näyttöön perustuva potilaspalaute
> Tee kyselyitä/tutkimuksia tiedon keräämiseksi | 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. | Neurologinen
> Multippeliskleroosi | Näyttöön perustuva potilaspalaute
> Muunna todisteet ja oivallukset poliittisiksi panoksiksi | 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. | Endokriininen
> Kasvuhäiriöt | Näyttöön perustuva potilaspalaute
> Muunna todisteet ja oivallukset poliittisiksi panoksiksi | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Diagnoosi ja lääkkeiden toimitus
> Tuki seulontaan ja varhaiseen havaitsemiseen | 100 | National | Regularly | 119012383199 |
| Implementation of newborn screening in the state of Paraná. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Diagnoosi ja lääkkeiden toimitus
> Tuki seulontaan ja varhaiseen havaitsemiseen | 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]. | Syöpä
> Syöpä: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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]. | Syöpä
> Syöpä: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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]. | Endokriininen
> Diabetes (sekä tyyppi 1 että tyyppi 2) | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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]. | Neuromuskulaarinen
> Lihasdystrofia | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 100 | Regional | Regularly | 119045134485 |
| We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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]. | Syöpä
> Syöpä: veri | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 10 000 | National | Regularly | 119046062542 |
| We are members of the State Advocacy Commission. | Syöpä
> Syöpä: rinta | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 100 | Local | Regularly | 119052625607 |
| Participation in advisory councils, forums, and public manifestos. | Verenvuoto
> Hemofilia | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 100 000 | National | Regularly | 119073437945 |
| … To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council]. | Krooninen
> Krooniset sairaudet yleisesti | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Krooninen
> Krooniset sairaudet yleisesti | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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 | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 1 000 | National | Regularly | 119074698753 |
| Yes, we hold seats on health councils and health agencies. | Syöpä
> Syöpä: veri | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 1 000 | National | Regularly | 119078307187 |
| The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 10 000 | National | Regularly | 119078420142 |
| We engage with government bodies in forums where matters relating to our cause are discussed. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 100 000 | National | Regularly | 119083316815 |
| Meetings with organisations operating at the same level. | Reumaattinen
> Reumaattiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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]. | Syöpä
> Syöpä: veri | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 10 000 | National | Regularly | 119046062542 |
| Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations. | Vammaisuus
> Vammaisuus: nuoret | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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 | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 10 000 | Regional | Sometimes | 119077778824 |
| Participation in scientific medical congresses and research. | Endokriininen
> Kasvuhäiriöt | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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. | Endokriininen
> Kasvuhäiriöt | Institutionaalinen hallinto
> Toimiminen tehokkaasti monien sidosryhmien verkostoissa | 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. | Reumaattinen
> Reumaattiset sairaudet: useimmat tyypit | Potilaan oikeuksien puolustaminen/elämänlaadun parantaminen
> Potilaskokemuksen suojaaminen/parantaminen | 1 000 | Local | Sometimes | 119074685227 |
| Educating patients on how to assert their rights when necessary. | Harvinainen
> Harvinaiset sairaudet: metaboliset/lysosomaalinen | Potilaan oikeuksien puolustaminen/elämänlaadun parantaminen
> Potilaskokemuksen suojaaminen/parantaminen | 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]. | Näköhaitta
> Näköhaitta | Potilaan oikeuksien puolustaminen/elämänlaadun parantaminen
> Tuki hoitoon liittyvissä oikeudellisissa toimissa | 1 000 | National | Regularly | 119065385473 |
vuorovaikutukset
toiminta ja edunvalvonta
43 maininnat
