| 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]. | VIH
> VIH | Asociación regulatoria
> Trabajando con 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. | Defensa del paciente
> Derechos del paciente | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratorio
> Fibrosis pulmonar | Asociación regulatoria
> Trabajando con organismos reguladores | 1000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromuscular
> Duchenne | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Defensa del paciente
> Derechos del paciente | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y 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. | Defensa del paciente
> Derechos del paciente | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y 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
> Lupus | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y 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. | Defensa del paciente
> Derechos del paciente | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables 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. | Personas mayores
> Personas mayores | Asociación regulatoria
> Asistir/facilitar reuniones con responsables 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
> Enfermedades raras: metabólicas/lisosomales | Asociación regulatoria
> Asistir/facilitar reuniones con responsables 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. | VIH
> VIH | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Regularly | 119062924366 |
| Ministry of Health. | Cardiovascular
> Enfermedades cardiovasculares y del corazón | Asociación regulatoria
> Asistir/facilitar reuniones con responsables 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. | Defensa del paciente
> Derechos del paciente | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratorio
> Fibrosis pulmonar | Asociación regulatoria
> Asistir/facilitar reuniones con responsables 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
> Enfermedades cardiovasculares y del corazón | Asociación regulatoria
> Con otros defensores de la salud | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Gastrointestinal
> Gastrointestinal: otro | Asociación regulatoria
> Con otros defensores de la salud | 1000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Raro
> Enfermedad de Wilson | Asociación regulatoria
> Con otros defensores de la salud | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Raro
> Enfermedades raras: genéticas | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Seguridad del paciente
> Iatrogénico | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 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 | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Raro
> Enfermedades raras: genéticas | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Hígado
> Enfermedades hepáticas: trasplantes | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 5000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratorio
> Fibrosis pulmonar | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 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
> Enfermedades raras: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Impactando en políticas y legislación
> Participar en audiencias públicas y 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
> Enfermedades crónicas en general | Impactando en políticas y legislación
> Participar en audiencias públicas y 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 | Impactando en políticas y legislación
> Participar en audiencias públicas y 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
> Esclerosis múltiple | Impactando en políticas y legislación
> Participar en audiencias públicas y 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 | Impactando en políticas y legislación
> Movilizar parlamentarios y 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. | VIH
> VIH | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 5000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Raro
> Enfermedades raras: genéticas | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Raro
> Enfermedades raras: genéticas | Impactando en políticas y legislación
> Abogar por proyectos de ley y derechos de protección del paciente | 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 | Impactando en políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100.000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cáncer
> Cáncer: pancreático | Impactando en políticas y legislación
> Abordando barreras/anomalías en la atención médica | 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
> Enfermedades raras: genéticas | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Respiratorio
> EPOC | Defensa de precios y asequibilidad
> Abogar por precios justos de los 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
> Enfermedades crónicas en general | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 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
> Enfermedades raras: genéticas | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Raro
> Enfermedades raras: metabólicas/lisosomales | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Respiratorio
> Respiratorio: la mayoría de las afecciones | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 5000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Respiratorio
> EPOC | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 1000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cáncer
> Cáncer: pancreático | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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. | Defensa del paciente
> Derechos del paciente | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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. | Hueso
> Osteoartritis y Osteoporosis | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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
> Enfermedades crónicas en general | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 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.] | Respiratorio
> EPOC | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Raro
> Enfermedades raras: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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. | Defensa del paciente
> Derechos del paciente | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 10.000 | National | Sometimes | 119073823192 |
| They consult us. | Neurológico
> Fibromialgia | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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
> Enfermedades raras: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Proporcionar evidencia del mundo real (RWE) a las agencias reguladoras | 1000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Raro
> Enfermedades raras: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 1000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodegenerativo
> Alzheimer | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias 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
> Enfermedades crónicas en general | Aportaciones del paciente basadas en evidencia
> Traducir evidencias e ideas en aportaciones para políticas | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Personas mayores
> Personas mayores | Diagnóstico y entrega de medicamentos
> Garantizar un uso seguro y eficaz de los 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 y entrega de medicamentos
> Garantizar un uso seguro y eficaz de los 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. | Defensa del paciente
> Derechos del paciente | Diagnóstico y entrega de medicamentos
> Garantizar un uso seguro y eficaz de los 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]. | Personas mayores
> Personas mayores | Diagnóstico y entrega de medicamentos
> Participar en el desarrollo de guías 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. | Personas mayores
> Personas mayores | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Sangrado
> Hemofilia | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 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
> Enfermedades cardiovasculares y del corazón | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 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
> Esclerosis múltiple | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 5000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurológico
> Esclerosis múltiple | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 10.000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | VIH
> VIH | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 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. | VIH
> VIH | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 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. | Defensa del paciente
> Derechos del paciente | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 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: la mayoría de las afecciones | Gobernanza institucional
> Mantener el estatus formal como entidad de interés público o benéfica | 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. | VIH
> VIH | Gobernanza institucional
> Mantener el estatus formal como entidad de interés público o benéfica | 5000 | Local | Regularly | 119072832940 |
interacciones
acciones y defensa
19 menciones
