| We have working groups with the Directorate-General for Public Health, the Directorate-General for Mental Health and Addictions, and the Directorate-General for Pharmacy of the Generalitat Valenciana [Valencia Regional Government]. | HIV
> HIV | Parceria regulatória
> A trabalhar com organismos reguladores | 5000 | Local | Regularly | 119026705868 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Parceria regulatória
> A trabalhar com organismos reguladores | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratório
> Fibrose pulmonar | Parceria regulatória
> A trabalhar com organismos reguladores | 1000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromuscular
> Duchenne | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 5000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Defesa do doente
> Direitos do doente | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | We do not communicate with patients directly | National | Rarely | 119049693177 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 10 000 | National | Sometimes | 119073823192 |
| We have recently completed IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report] assessments for Anifrolumab [for adults with moderate to severe, active autoantibody-positive systemic lupus erythematosus (SLE)] and Voclosporin [used to treat lupus nephritis].We are currently engaged in the IPT process for Obinutuzumab [used to treat specific blood cancers and active lupus nephritis]. | Reumático
> Lúpus | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologias de Saúde (ATS) e de reembolso | 100 000 | National | Regularly | 119076492282 |
| We are engaged with the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency of Medicines and Medical Devices] to advocate for access to innovative treatments. | Defesa do doente
> Direitos do doente | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Sangramento
> Perturbações hemorrágicas: a maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 5000 | Regional | Regularly | 119012535987 |
| We provide advisory input to government authorities on specific matters and regulatory provisions relating to our area of practice — the older adult population. | Pessoas mais velhas
> Pessoas mais velhas | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | We do not communicate with patients directly | National | Regularly | 119013803044 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Raro
> Doenças raras: metabólicas/lisossomais | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 100 | National | Rarely | 119022231157 |
| We actively participate in meetings with the Ministry of Health, including with the HIV Control Division — covering viral hepatitis, tuberculosis, and other STIs [ITS, Infecciones de Transmisión Sexual – Sexually Transmitted Infections] — as well as with the Directorate-General for Pharmacy, among others. | HIV
> HIV | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 100 000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Reumático
> Doenças reumáticas: a maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 10 000 | National | Regularly | 119062924366 |
| Ministry of Health. | Cardiovascular
> Doenças cardiovasculares & cardíacas | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 5000 | National | Sometimes | 119072934071 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratório
> Fibrose pulmonar | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | 1000 | National | Regularly | 119075356350 |
| Not in my capacity as President of ACPA [Asociación Canaria de Pacientes - Canary Islands Patients’ Association], but rather as a member of the POP [Plataforma de Organizaciones de Pacientes - Patients’ Organisations Platform] Patient Platform and as President of Feasam [Federación de Asociaciones de Salud Mental de la Región de Murcia - Federation of Mental Health Associations of the Region of Murcia]. | Cardiovascular
> Doenças cardiovasculares & cardíacas | Parceria regulatória
> Com outros defensores de saúde | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Gastrointestinal
> Gastrointestinal: outro | Parceria regulatória
> Com outros defensores de saúde | 1000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Raro
> Doença de Wilson | Parceria regulatória
> Com outros defensores de saúde | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Raro
> Doenças raras: genética | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Segurança do doente
> Iatrogénico | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Regularly | 119045262726 |
| Petitions have been submitted to the European Parliament — specifically to its Committee on Petitions, registered under number 1468/2024 — concerning the diagnosis and treatment of patients with coeliac disease in the EU. In addition, more than 17 resolutions have been advanced in the Parliament of Catalonia, all of which were adopted, alongside one Private Member's Bill [Proposición de Ley] and two Non-Legislative Motions [Proposiciones No de Ley] in the Congress of Deputies. Amendments have also been submitted to a number of legislative proposals, including the Universal Healthcare Access Bill, the Health Equity Bill, and the Medicines Bill, among others. | Gastrointestinal
> Celíaco | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 100 000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Raro
> Doenças raras: genética | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Fígado
> Doenças hepáticas: transplantes | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 5000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratório
> Fibrose pulmonar | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Regularly | 119075356350 |
| Ongoing contact and coordination with César Hernández [Director General of the Common Portfolio of the NHS and Pharmacy within the Spanish Ministry of Health]. | Raro
> Doenças raras: a maioria dos tipos | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 100 000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Sangramento
> Perturbações hemorrágicas: a maioria dos tipos | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | Regional | Regularly | 119036712634 |
| POP [Plataforma de Organizaciones de Pacientes - Patients’ Organisations Platform] represents patient interests before the regulatory bodies and processes involved in the assessment, pricing, and reimbursement of medicines, through institutional engagement, contributions to public consultations, and the development of position statements aimed at ensuring equity and access. | Crónico
> Doenças crónicas em geral | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | We do not communicate with patients directly | National | Regularly | 119052165521 |
| Petitions have been submitted to the European Parliament — specifically to its Committee on Petitions, registered under number 1468/2024 — concerning the diagnosis and treatment of patients with coeliac disease in the EU. In addition, more than 17 resolutions have been advanced in the Parliament of Catalonia, all of which were adopted, alongside one Private Member's Bill [Proposición de Ley] and two Non-Legislative Motions [Proposiciones No de Ley] in the Congress of Deputies. Amendments have also been submitted to a number of legislative proposals, including the Universal Healthcare Access Bill, the Health Equity Bill, and the Medicines Bill, among others. | Gastrointestinal
> Celíaco | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 100 000 | National | Regularly | 119053766557 |
| We do not intervene in pricing decisions; however, we advocate for patient and stakeholder interests before the relevant public authorities. | Neurológico
> Esclerose múltipla | Impacto nas políticas e legislação
> Participar em audiências públicas e consultas | 5000 | Local | Regularly | 119064523376 |
| Petitions have been submitted to the European Parliament — specifically to its Committee on Petitions, registered under number 1468/2024 — concerning the diagnosis and treatment of patients with coeliac disease in the EU. In addition, more than 17 resolutions have been advanced in the Parliament of Catalonia, all of which were adopted, alongside one Private Member's Bill (Proposición de Ley) and two Non-Legislative Motions (Proposiciones No de Ley) in the Congress of Deputies. Amendments have also been submitted to a number of legislative proposals, including the Universal Healthcare Access Bill, the Health Equity Bill, and the Medicines Bill, among others. | Gastrointestinal
> Celíaco | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 100 000 | National | Regularly | 119053766557 |
| We are registered as an interest group with the Generalitat Valenciana in the REGIA [Registro de Grupos de Interés de la Administración de la Generalitat - Register of Interest Groups of the Administration of the Generalitat Valenciana] register under number 188. We participate on a bimonthly basis in strategic meetings held with both the Regional Ministry of Health and the Regional Ministry of Equality and Social Services. | HIV
> HIV | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 5000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Raro
> Doenças raras: genética | Impacto nas políticas e legislação
> Mobilizar parlamentares e líderes políticos | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Raro
> Doenças raras: genética | Impacto nas políticas e legislação
> Defender projetos de lei e direitos de proteção dos doentes | 1000 | National | Regularly | 119012112198 |
| Petitions have been submitted to the European Parliament — specifically to its Committee on Petitions, registered under number 1468/2024 — concerning the diagnosis and treatment of patients with coeliac disease in the EU. In addition, more than 17 resolutions have been advanced in the Parliament of Catalonia, all of which were adopted, alongside one Private Member's Bill (Proposición de Ley) and two Non-Legislative Motions (Proposiciones No de Ley) in the Congress of Deputies. Amendments have also been submitted to a number of legislative proposals, including the Universal Healthcare Access Bill, the Health Equity Bill, and the Medicines Bill, among others. | Gastrointestinal
> Celíaco | Impacto nas políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 100 000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cancro
> Cancro: pancreático | Impacto nas políticas e legislação
> Abordar barreiras/anomalias nos cuidados médicos | 1000 | National | Rarely | 119012120290 |
| Nucleoside therapy for TK2d has recently received approval from the EMA [European Medicines Agency] and the FDA [Food and Drug Administration], so the next phase will be price regulation. | Raro
> Doenças raras: genética | Defesa de preços e acessibilidade financeira
> Defender preços justos para medicamentos | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Respiratório
> DPOC | Defesa de preços e acessibilidade financeira
> Defender preços justos para medicamentos | 1000 | National | Regularly | 119078128994 |
| POP [Plataforma de Organizaciones de Pacientes - Patients’ Organisations Platform] represents patient interests before the regulatory bodies and processes involved in the assessment, pricing, and reimbursement of medicines, through institutional engagement, contributions to public consultations, and the development of position statements aimed at ensuring equity and access. | Crónico
> Doenças crónicas em geral | Defesa de preços e acessibilidade financeira
> Participar em negociações do conselho de revisão de preços | We do not communicate with patients directly | National | Regularly | 119052165521 |
| Nucleoside therapy for TK2d [Thymidine Kinase 2 deficiency] has recently received approval from the EMA [European Medicines Agency] and the FDA [Food and Drug Administration], so the next phase will be price regulation. | Raro
> Doenças raras: genética | Defesa de preços e acessibilidade financeira
> Participar em negociações do conselho de revisão de preços | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Raro
> Doenças raras: metabólicas/lisossomais | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Respiratório
> Respiratório: a maioria das condições | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 5000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Respiratório
> DPOC | Defesa de preços e acessibilidade financeira
> Defender a inclusão do produto em listas de reembolso/formulários nacionais | 1000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cancro
> Cancro: pancreático | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1000 | National | Rarely | 119012120290 |
| We are engaged with the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency of Medicines and Medical Devices] to advocate for access to innovative treatments. | Defesa do doente
> Direitos do doente | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endócrino
> Diabetes (tipos 1 e 2) | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5000 | Regional | Regularly | 119019803062 |
| We successfully halted the withdrawal of public reimbursement for SYSADOAs [Symptomatic Slow-Acting Drugs for Osteoarthritis], an effective and well-established treatment for osteoarthritis. | Osso
> Osteoartrite e Osteoporose | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5000 | National | Regularly | 119022568142 |
| POP [Plataforma de Organizaciones de Pacientes - Patients’ Organisations Platform] represents patient interests before the regulatory bodies and processes involved in the assessment, pricing, and reimbursement of medicines, through institutional engagement, contributions to public consultations, and the development of position statements aimed at ensuring equity and access. | Crónico
> Doenças crónicas em geral | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | We do not communicate with patients directly | National | Regularly | 119052165521 |
| Removal of the prior authorisation requirement for triple therapy [Doctors in Spain needed administrative approval from the National Health System to prescribe or fully reimburse a combined respiratory drug in a single inhaler.] | Respiratório
> DPOC | Melhorar os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Raro
> Doenças raras: a maioria dos tipos | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar decisões | 1000 | National | Regularly | 119055416525 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar decisões | 10 000 | National | Sometimes | 119073823192 |
| They consult us. | Neurológico
> Fibromialgia | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar decisões | Do not know | Local | Sometimes | 119075536668 |
| ... Advise from the patient's perspective. Influence through formal participation or institutional pressure. Contribute social evidence and patient experience. Contributing real-world evidence and patient experience. | Raro
> Doenças raras: a maioria dos tipos | Contribuição do doente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências reguladoras | 1000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Raro
> Doenças raras: a maioria dos tipos | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 1000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodegenerativa
> Alzheimer | Contribuição do doente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | We do not communicate with patients directly | Regional | Regularly | 119067801531 |
| POP [Plataforma de Organizaciones de Pacientes - Patients’ Organisations Platform] represents patient interests before the regulatory bodies and processes involved in the assessment, pricing, and reimbursement of medicines, through institutional engagement, contributions to public consultations, and the development of position statements aimed at ensuring equity and access. | Crónico
> Doenças crónicas em geral | Contribuição do doente baseada em evidências
> Traduzir evidências e conhecimentos em contributos para políticas | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Pessoas mais velhas
> Pessoas mais velhas | Diagnóstico e entrega de medicamentos
> Garantir uma utilização segura e eficaz dos medicamentos | We do not communicate with patients directly | National | Regularly | 119013803044 |
| By providing information on the indications for which administration of the orphan medicinal product is clearly necessary, as well as the circumstances in which alternative forms of healthcare provision may be expected or appropriate. | Raro
> Síndrome de Von Hippel-Lindau | Diagnóstico e entrega de medicamentos
> Garantir uma utilização segura e eficaz dos medicamentos | 100 | National | Rarely | 119046844450 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Diagnóstico e entrega de medicamentos
> Garantir uma utilização segura e eficaz dos medicamentos | 10 000 | National | Sometimes | 119073823192 |
| … We also issue practice recommendations for members of the ESGG [Sociedad Española de Geriatría y Gerontología – Spanish Society of Geriatrics and Gerontology]. | Pessoas mais velhas
> Pessoas mais velhas | Diagnóstico e entrega de medicamentos
> Participar no desenvolvimento de diretrizes clínicas | We do not communicate with patients directly | National | Regularly | 119013803044 |
| We provide advisory input to government authorities on specific matters and regulatory provisions relating to our area of practice — the older adult population. | Pessoas mais velhas
> Pessoas mais velhas | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Sangramento
> Hemofilia | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 100 | Regional | Regularly | 119053275561 |
| Not directly through ACPA [Asociación Comarcal de Personas con Ansiedad - Regional Association of People with Anxiety], but through Rafael Martínez in his capacity as President of FEASAM [Federación de Asociaciones de Salud Mental de la Región de Murcia - Federation of Mental Health Associations of the Region of Murcia] and as a member of the POP [Patients’ Organisations Platform - Plataforma de Organizaciones de Pacientes] Patient Platform. | Cardiovascular
> Doenças cardiovasculares & cardíacas | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Raro
> Doenças raras: a maioria dos tipos | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 1000 | National | Regularly | 119055416525 |
| We do not intervene in pricing decisions; however, we do represent and defend the interests of those we advocate for before the relevant public authorities. | Neurológico
> Esclerose múltipla | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 5000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurológico
> Esclerose múltipla | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 10 000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | HIV
> HIV | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 10 000 | Regional | No | 119072419533 |
| We are registered as an interest group with the Generalitat Valenciana in the REGIA [Registro de Grupos de Interés de la Administración de la Generalitat - Register of Interest Groups of the Administration of the Generalitat Valenciana] register under number 188. We participate on a bimonthly basis in strategic meetings held with both the Regional Ministry of Health and the Regional Ministry of Equality and Social Services. | HIV
> HIV | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 5000 | Local | Regularly | 119072832940 |
| The relationship between Foro Español de Pacientes [Spanish Patients’ Forum] and the AEMPS [Agencia Española de Medicamentos y Productos Sanitarios – Spanish Agency for Medicines and Medical Devices] is primarily institutional, advisory, and collaborative in nature, with the aim of incorporating the patient perspective into medicines and medical devices policy in Spain.1. FEP participation in AEMPS bodies and committees. The FEP participates in a number of the Agency's advisory and technical bodies. For example, the President of the FEP, Andoni Lorenzo Garmendia, joined the AEMPS Committee for the Safety of Medicinal Products for Human Use. This involvement ensures that the patient voice and experience are taken into account in matters of safety and pharmacovigilance. In addition, the FEP participates in the monitoring and dissemination of IPT [Informes de Posicionamiento Terapéutico - Therapeutic Positioning Reports], prepared by the Agency for the evaluation of medicinal products. | Defesa do doente
> Direitos do doente | Governação institucional
> Garantir representação nos órgãos consultivos governamentais | 10 000 | National | Sometimes | 119073823192 |
| The organisation has held Public Interest status, as designated by the Spanish Ministry of the Interior, since 2008. | Neurológico
> Neurológico: a maioria das condições | Governação institucional
> Manter o estatuto formal de entidade de interesse público ou de caráter beneficente | 1000 | Local | Rarely | 119054524092 |
| We are registered as an interest group with the Generalitat Valenciana in the REGIA [Registro de Grupos de Interés de la Administración de la Generalitat - Register of Interest Groups of the Administration of the Generalitat Valenciana] register under number 188. | HIV
> HIV | Governação institucional
> Manter o estatuto formal de entidade de interesse público ou de caráter beneficente | 5000 | Local | Regularly | 119072832940 |
interações
ações & defesa
19 menções
