PatientView | Brasile approfondimenti dai Gruppi di Pazienti: Un posto al tavolo dei prezzi

Obiettivi del gruppo di pazienti

Le percentuali seguenti evidenziano come i 73 gruppi di pazienti interagiscono con le autorità regolatorie e si fanno portavoce degli interessi dei pazienti. Poiché i partecipanti possono essere rappresentati in più di un'area, le percentuali potrebbero non totalizzare il 100%.

interazioni

Come i gruppi di pazienti interagiscono con le autorità regolatorie dei farmaci

Scopri cosa significano gli obiettivi

43 menzioni

27 menzioni

24 menzioni

7 menzioni

azioni e advocacy

Come i gruppi di pazienti ottengono l'accesso ai medicinali

Scopri cosa significano gli obiettivi

18 menzioni

16 menzioni

14 menzioni

3 menzioni

2 menzioni

1 menzione

Testo in inglese	Area terapeutica	Categoria	Pazienti raggiunti	Copertura geografica	Coinvolgimento normativo	Rispondente
Public consultations, public hearings, advocacy events, national and international forums.	Cancro > Cancro: altro	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	5000	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].	Neuromuscolare > Distrofia muscolare	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	5000	National	Regularly	119046302524
Participation in advisory councils, forums, and public manifestos.	Sanguinamento > Emofilia	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	1000	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].	Respiratorio > Asma e BPCO	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	10.000	Regional	Sometimes	119077778824
We engage with government bodies in forums where matters relating to our cause are discussed.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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].	Cancro > Cancro: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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].	Cancro > Cancro: altro	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	10.000	National	Sometimes	119017268057
CONITEC [Comissão Nacional de Incorporação de Tecnologias no SUS – National Committee for Health Technology Incorporation].	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	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].	Cancro > Cancro: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	5000	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.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	5000	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].	Neuromuscolare > Distrofia muscolare	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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].	Cancro > Cancro: sangue	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	5000	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].	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Respiratorio > Respiratorio: la maggior parte delle condizioni	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Disabilità visiva > Disabilità visiva	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	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	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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].	Endocrino > Disturbi della crescita	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	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].	Respiratorio > Asma e BPCO	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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].	Cronico > Malattie croniche in generale	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Cronico > Malattie croniche in generale	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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].	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	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.	Endocrino > Disturbi della crescita	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	1000	National	Regularly	119078211127
We support the registration of medicines.	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Contribuire alle presentazioni per l'Autorizzazione all'Immissione in Commercio	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].	Cancro > Cancro: altro	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	5000	National	Regularly	119042861822
Direct meetings with the division of the Ministry of Health responsible for rare disease care.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Sanguinamento > Emofilia	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	1000	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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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;	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	National	Regularly	119074690047
… Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies.	Cronico > Malattie croniche in generale	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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].	Raro > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	1000	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].	Cancro > Cancro: la maggior parte dei tipi	Partenariato normativo > Con altri sostenitori della salute	5000	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].	Cancro > Cancro: la maggior parte dei tipi	Partenariato normativo > Con altri sostenitori della salute	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].	Neuromuscolare > Distrofia muscolare	Partenariato normativo > Con altri sostenitori della salute	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Con altri sostenitori della salute	100.000	National	Regularly	119073437945
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	5000	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.	Sanguinamento > Emofilia	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	1000	Regional	Regularly	119052656211
We advocate for public policies, access, treatment, updates, and so forth.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	5000	National	Regularly	119055145819
We work alongside legislators to drive improvements and advance bills that serve the interests of patients.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	1000	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Reumatico > Malattie reumatiche: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	1000	Local	Sometimes	119074685227
… Strategic social oversight and mobilisation efforts also encompass dialogue with regulatory bodies.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	5000	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.	Endocrino > Disturbi della crescita	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	1000	National	Regularly	119078211127
Public consultations; public hearings.	Cancro > Cancro: altro	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	10.000	National	Sometimes	119017268057
Through mobilisation efforts and active participation in public calls, public consultations, and public hearings.	Cancro > Cancro: ginecologico	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	National	Regularly	119021190367
Participating in the development of public policies and in meetings concerning the incorporation of medicines.	Neurodegenerativo > Alzheimer	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	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.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	National	Regularly	119042861822
Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations.	Disabilità > Disabilità: giovani	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	National	Regularly	119047401612
Public hearings.	Cancro > Cancro: seno	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	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.	Cancro > Cancro: seno	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	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].	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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].	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	National	Regularly	119074846445
Public hearings and meetings with health secretariats.	Cronico > Malattie croniche in generale	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	National	Regularly	119074863856
By participating in public consultations.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	Regional	Sometimes	119077025336
Through advocacy activities, public consultations, public hearings, and social media.	Cancro > Cancro: seno	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	100	National	Regularly	119077684629
We have participated as speakers at public hearings on disease treatment.	Reumatico > Lupus	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	100	National	Regularly	119077822580
... We are actively engaged in public consultations [in Brazil] in the interests of patients.	Cancro > Cancro: sangue	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Endocrino > Disturbi della crescita	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	National	Regularly	119078307187
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	5000	National	Regularly	119045358161
Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	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.	Sanguinamento > Emofilia	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	1000	Regional	Regularly	119052656211
We work alongside legislators to drive improvements and advance bills that serve the interests of patients.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	1000	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	100.000	National	Regularly	119074690047
… and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	5000	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.	Endocrino > Disturbi della crescita	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	5000	National	Regularly	119078218520
Public policies pertaining to patient rights.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Sostenere le leggi e i diritti per la protezione dei pazienti	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	100	National	Regularly	119012383199
By participating in the development of public policies.	Neurodegenerativo > Alzheimer	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	5000	National	Regularly	119037286447
Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	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.	Sanguinamento > Emofilia	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	1000	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.	Neurologico > Sclerosi multipla	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	100.000	National	Regularly	119073437945
… and working alongside members of the Chamber of Deputies and the Senate to advance dedicated legislation.	Raro > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	5000	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.	Reumatico > Lupus	Influenzare le politiche e la legislazione > Contribuire alla redazione della legislazione in materia di salute pubblica	100	National	Regularly	119077822580
We have already approached manufacturers seeking a social pricing scheme, without success.	HIV > HIV	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	10.000	Local	Sometimes	119072634823
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	Salute generale > Salute pubblica	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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].	Raro > Malattie rare: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	10.000	National	Rarely	119078192576
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	Salute generale > Salute pubblica	Advocacy per prezzi e accessibilità economica > Affrontare le barriere di costo per le persone a basso reddito e vulnerabili	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.	Sangue > Malattia falciforme	Advocacy per prezzi e accessibilità economica > Monitoraggio e tracciamento dei prezzi dei farmaci/carenze di farmaci	5000	National	Regularly	119069254783
We have already approached manufacturers seeking a social pricing scheme, without success.	HIV > HIV	Advocacy per prezzi e accessibilità economica > Monitoraggio e tracciamento dei prezzi dei farmaci/carenze di farmaci	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.	Neurologico > Sclerosi multipla	Advocacy per prezzi e accessibilità economica > Monitoraggio e tracciamento dei prezzi dei farmaci/carenze di farmaci	10.000	National	Regularly	119073066358
We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil].	Raro > Malattie rare: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Monitoraggio della sostituzione del prodotto	10.000	National	Rarely	119078192576
Participating in the development of public policies and in meetings concerning the incorporation of medicines.	Neurodegenerativo > Alzheimer	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	5000	National	Regularly	119037286447
Participation in debates on the incorporation of therapies into the SUS [Sistema Único de Saúde – Unified Health System].	Disabilità visiva > Disabilità visiva	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	1000	National	Regularly	119065385473
Yes, in the reimbursement incorporation processes for the three medicines indicated for AME [Atrofia Muscular Espinhal – Spinal Muscular Atrophy].	Neuromuscolare > Atrofia muscolare spinale (SMA)	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	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].	Neurologico > Sclerosi multipla	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	Not specified	Local	Regularly	119072244093
Ensuring access for patients who cannot afford treatment in the context of reimbursement and coverage decisions.	Salute generale > Salute pubblica	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	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].	Cancro > Cancro: seno	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	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].	Neurologico > Sclerosi multipla	Advocacy per prezzi e accessibilità economica > Partecipare a campagne di sensibilizzazione	Not specified	Local	Regularly	119072244093
Public policies concerning patient rights, including state-level awareness campaigns [on issues of drug pricing].	Neurologico > Sclerosi multipla	Advocacy per prezzi e accessibilità economica > Partecipare a campagne di sensibilizzazione	1000	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.	Neuromuscolare > Miastenia grave	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	1000	National	Rarely	119020326698
Regarding access to treatments and medicines.	Sanguinamento > Emofilia	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	100	Local	Regularly	119050022800
We advocate for public policies, access, treatment, updates, and so forth.	Raro > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	5000	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.	Sangue > Malattia falciforme	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	5000	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].	Neurologico > Sclerosi multipla	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	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.	Neurologico > Sclerosi multipla	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	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.	Reumatico > Malattie reumatiche: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	10.000	Regional	Sometimes	119077778824
We are responsible for facilitating a transfer mechanism to reduce the cost of advanced therapies in the country [Brazil].	Raro > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	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.	Raro > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Affrontare le disparità nell'accesso e nella gestione	100	National	Regularly	119012383199
Implementation of neonatal screening in the state of Paraná [Brazil]; implementation of Law No. 14.154/2021.	Raro > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Affrontare le disparità nell'accesso e nella gestione	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.	Sangue > Malattia falciforme	Miglioramento dei percorsi di accesso > Affrontare le disparità nell'accesso e nella gestione	5000	National	Regularly	119069254783
Direct engagement with members of the Chamber of Deputies and the Senate [in Brazil] serving on the rare diseases committee.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Miglioramento dei percorsi di accesso > Miglioramento dell'accesso alle terapie rare/ultra-rare	100	National	Regularly	119051551373
Direct meetings with the division of the Ministry of Health responsible for rare disease care.	Neuromuscolare > Atrofia muscolare spinale (SMA)	Miglioramento dei percorsi di accesso > Miglioramento dell'accesso alle terapie rare/ultra-rare	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].	Disabilità visiva > Disabilità visiva	Miglioramento dei percorsi di accesso > Miglioramento dell'accesso alle terapie rare/ultra-rare	1000	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.	Neurologico > Sclerosi multipla	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	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.	Neuromuscolare > Distrofia muscolare	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	1000	National	Regularly	119077508858
Advocacy meetings on behalf of therapies, presenting an up-to-date overview of the Brazilian landscape and real-world evidence.	Neuromuscolare > Distrofia muscolare	Contributo del paziente basato sull'evidenza > Fornire prove del mondo reale (RWE) alle agenzie regolatorie	1000	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.	Cancro > Cancro: la maggior parte dei tipi	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	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.	Endocrino > Disturbi della crescita	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	1000	National	Regularly	119078211127
Participation in scientific medical congresses and research.	Endocrino > Disturbi della crescita	Contributo del paziente basato sull'evidenza > Condurre sondaggi/ricerche per generare dati	1000	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.	Neurologico > Sclerosi multipla	Contributo del paziente basato sull'evidenza > Tradurre prove e approfondimenti in contributi politici	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.	Endocrino > Disturbi della crescita	Contributo del paziente basato sull'evidenza > Tradurre prove e approfondimenti in contributi politici	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Diagnosi e consegna dei medicinali > Supporto allo screening e alla diagnosi precoce	100	National	Regularly	119012383199
Implementation of newborn screening in the state of Paraná.	Raro > Malattie rare: la maggior parte dei tipi	Diagnosi e consegna dei medicinali > Supporto allo screening e alla diagnosi precoce	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].	Cancro > Cancro: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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].	Cancro > Cancro: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	5000	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].	Endocrino > Diabete (sia di tipo 1 che di tipo 2)	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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].	Neuromuscolare > Distrofia muscolare	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	100	Regional	Regularly	119045134485
We participate actively in decision-making bodies, conducting advocacy work with the legislature and government secretariats.	Raro > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	5000	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].	Cancro > Cancro: sangue	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	10.000	National	Regularly	119046062542
We are members of the State Advocacy Commission.	Cancro > Cancro: seno	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	100	Local	Regularly	119052625607
Participation in advisory councils, forums, and public manifestos.	Sanguinamento > Emofilia	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	1000	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.	Neurologico > Sclerosi multipla	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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.	Neurologico > Sclerosi multipla	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	100.000	National	Regularly	119073437945
… To effective representation through a formal presence within the CNS [Conselho Nacional de Saúde – National Health Council].	Cronico > Malattie croniche in generale	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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.	Cronico > Malattie croniche in generale	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	1000	National	Regularly	119074698753
Yes, we hold seats on health councils and health agencies.	Cancro > Cancro: sangue	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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.	Raro > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	1000	National	Regularly	119078307187
The organisation to which I belong holds a seat on the Conselho Nacional de Saúde [National Health Council].	Raro > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	10.000	National	Regularly	119078420142
We engage with government bodies in forums where matters relating to our cause are discussed.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	100.000	National	Regularly	119083316815
Meetings with organisations operating at the same level.	Reumatico > Malattie reumatiche: la maggior parte dei tipi	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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].	Cancro > Cancro: sangue	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	10.000	National	Regularly	119046062542
Our activities encompass advocacy, participation in meetings, submission of formal correspondence, and community mobilisation in public consultations.	Disabilità > Disabilità: giovani	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	1000	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.	Neurologico > Sclerosi multipla	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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.	Neurologico > Sclerosi multipla	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	1000	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.	Raro > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	10.000	Regional	Sometimes	119077778824
Participation in scientific medical congresses and research.	Endocrino > Disturbi della crescita	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	1000	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.	Endocrino > Disturbi della crescita	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	1000	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.	Reumatico > Malattie reumatiche: la maggior parte dei tipi	Tutela dei diritti dei pazienti/miglioramento della qualità della vita > Proteggere/migliorare l'esperienza del paziente	1000	Local	Sometimes	119074685227
Educating patients on how to assert their rights when necessary.	Raro > Malattie rare: metaboliche/lisosomiali	Tutela dei diritti dei pazienti/miglioramento della qualità della vita > Proteggere/migliorare l'esperienza del paziente	1000	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].	Disabilità visiva > Disabilità visiva	Tutela dei diritti dei pazienti/miglioramento della qualità della vita > Supporto nelle azioni legali correlate al trattamento	1000	National	Regularly	119065385473

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Obiettivi del gruppo di pazienti

Come i gruppi di pazienti interagiscono con le autorità regolatorie dei farmaci

Come i gruppi di pazienti ottengono l'accesso ai medicinali

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