| 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 | Regelgevend partnerschap
> Werken met regelgevende instanties | 5.000 | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Regelgevend partnerschap
> Werken met regelgevende instanties | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoir
> Longfibrose | Regelgevend partnerschap
> Werken met regelgevende instanties | 1.000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromusculair
> Duchenne | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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]. | Reumatisch
> Lupus | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 5.000 | 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. | Oudere mensen
> Oudere mensen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | We do not communicate with patients directly | National | Regularly | 119013803044 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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 | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 100.000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Regularly | 119062924366 |
| Ministry of Health. | Cardiovasculair
> Hart- en vaatziekten | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 5.000 | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoir
> Longfibrose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 1.000 | 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]. | Cardiovasculair
> Hart- en vaatziekten | Regelgevend partnerschap
> Met andere zorgadvocaten | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Maagdarmkanaal
> Maagdarmkanaal: overig | Regelgevend partnerschap
> Met andere zorgadvocaten | 1.000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Zeldzaam
> Ziekte van Wilson | Regelgevend partnerschap
> Met andere zorgadvocaten | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Patiëntveiligheid
> Iatrogeen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | 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. | Maagdarmkanaal
> Coeliakie | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100.000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Lever
> Leverziekten: transplantaties | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 5.000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoir
> Longfibrose | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | 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]. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100.000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Bloeding
> Bloedingsstoornissen: de meeste typen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 5.000 | 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. | Chronisch
> Chronische ziekten in het algemeen | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Maagdarmkanaal
> Coeliakie | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Neurologisch
> Multiple sclerose | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 5.000 | 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. | Maagdarmkanaal
> Coeliakie | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 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 | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 5.000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Beleid en wetgeving beïnvloeden
> Pleit voor wetsvoorstellen en rechten ter bescherming van patiënten | 1.000 | 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. | Maagdarmkanaal
> Coeliakie | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100.000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Kanker
> Kanker: alvleesklier | Beleid en wetgeving beïnvloeden
> Barrières/anomalieën in de medische zorg aanpakken | 1.000 | 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. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Respiratoir
> COPD | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 1.000 | 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. | Chronisch
> Chronische ziekten in het algemeen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Neem deel aan onderhandelingen met de prijsbeoordelingscommissie | 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. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Pleitbezorging voor prijsstelling en betaalbaarheid
> Neem deel aan onderhandelingen met de prijsbeoordelingscommissie | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Respiratoir
> Ademhaling: de meeste aandoeningen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 5.000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Respiratoir
> COPD | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 1.000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Kanker
> Kanker: alvleesklier | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 5.000 | 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. | Bot
> Artrose en Osteoporose | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 5.000 | 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. | Chronisch
> Chronische ziekten in het algemeen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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.] | Respiratoir
> COPD | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 1.000 | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 10.000 | National | Sometimes | 119073823192 |
| They consult us. | Neurologisch
> Fibromyalgie | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Op bewijs gebaseerde patiëntinbreng
> Verstrek Real-World Evidence (RWE) aan regelgevende instanties | 1.000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 1.000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodegeneratief
> Alzheimer | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 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. | Chronisch
> Chronische ziekten in het algemeen | Op bewijs gebaseerde patiëntinbreng
> Vertaal bewijs en inzichten naar beleidsinput | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Oudere mensen
> Oudere mensen | Diagnose en medicijnbezorging
> Zorg voor veilig en effectief medicijngebruik | 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. | Zeldzaam
> Von Hippel-Lindau-syndroom | Diagnose en medicijnbezorging
> Zorg voor veilig en effectief medicijngebruik | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Diagnose en medicijnbezorging
> Zorg voor veilig en effectief medicijngebruik | 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]. | Oudere mensen
> Oudere mensen | Diagnose en medicijnbezorging
> Deelnemen aan het ontwikkelen van klinische richtlijnen | 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. | Oudere mensen
> Oudere mensen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Bloeding
> Hemofilie | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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. | Cardiovasculair
> Hart- en vaatziekten | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 1.000 | 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. | Neurologisch
> Multiple sclerose | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 5.000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurologisch
> Multiple sclerose | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 10.000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | HIV
> HIV | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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 | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 5.000 | 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. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 10.000 | National | Sometimes | 119073823192 |
| The organisation has held Public Interest status, as designated by the Spanish Ministry of the Interior, since 2008. | Neurologisch
> Neurologisch: de meeste aandoeningen | Institutioneel bestuur
> Formele status als publiekrechtelijke of charitatieve instelling behouden | 1.000 | 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 | Institutioneel bestuur
> Formele status als publiekrechtelijke of charitatieve instelling behouden | 5.000 | Local | Regularly | 119072832940 |
interacties
acties & belangenbehartiging
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