| 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 | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 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. | Patientenvertretung
> Patientenrechte | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Atemwege
> Lungenfibrose | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 1.000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromuskulär
> Duchenne | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Patientenvertretung
> Patientenrechte | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Patientenvertretung
> Patientenrechte | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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]. | Rheumatisch
> Lupus | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Patientenvertretung
> Patientenrechte | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Blutung
> Blutungserkrankungen: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Ältere Menschen
> Ältere Menschen | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | We do not communicate with patients directly | National | Regularly | 119013803044 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Selten
> Seltene Krankheiten: Metabolisch/Lysosomal | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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 | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 100.000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Rheumatisch
> Rheumatische Erkrankungen: die meisten Arten | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Regularly | 119062924366 |
| Ministry of Health. | Kardiovaskulär
> Herz-Kreislauf- & Herzerkrankungen | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Patientenvertretung
> Patientenrechte | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Atemwege
> Lungenfibrose | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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]. | Kardiovaskulär
> Herz-Kreislauf- & Herzerkrankungen | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Gastrointestinal
> Gastrointestinal: Sonstiges | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 1.000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Selten
> Morbus Wilson | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Selten
> Seltene Erkrankungen: genetisch | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 1.000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Patientensicherheit
> Iatrogen | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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. | Gastrointestinal
> Zöliakie | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 100.000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Selten
> Seltene Erkrankungen: genetisch | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Leber
> Lebererkrankungen: Transplantationen | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 5.000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Atemwege
> Lungenfibrose | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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]. | Selten
> Seltene Krankheiten: die meisten Typen | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 100.000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Blutung
> Blutungserkrankungen: die meisten Typen | Einfluss auf Politik und Gesetzgebung
> An öffentlichen Anhörungen und Konsultationen teilnehmen | 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 Krankheiten im Allgemeinen | Einfluss auf Politik und Gesetzgebung
> An öffentlichen Anhörungen und Konsultationen teilnehmen | 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
> Zöliakie | Einfluss auf Politik und Gesetzgebung
> An öffentlichen Anhörungen und Konsultationen teilnehmen | 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 Sklerose | Einfluss auf Politik und Gesetzgebung
> An öffentlichen Anhörungen und Konsultationen teilnehmen | 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. | Gastrointestinal
> Zöliakie | Einfluss auf Politik und Gesetzgebung
> Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 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 | Einfluss auf Politik und Gesetzgebung
> Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 5.000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Selten
> Seltene Erkrankungen: genetisch | Einfluss auf Politik und Gesetzgebung
> Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Selten
> Seltene Erkrankungen: genetisch | Einfluss auf Politik und Gesetzgebung
> Eintreten für Gesetze zum Patientenschutz und Patientenrechte | 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. | Gastrointestinal
> Zöliakie | Einfluss auf Politik und Gesetzgebung
> Mitwirken an der Ausarbeitung von Gesetzen im Bereich der öffentlichen Gesundheit | 100.000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Krebs
> Krebs: Bauchspeicheldrüse | Einfluss auf Politik und Gesetzgebung
> Barrieren/Anomalien in der medizinischen Versorgung beseitigen | 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. | Selten
> Seltene Erkrankungen: genetisch | Preisgestaltung und Erschwinglichkeitsförderung
> Für faire Medikamentenpreise eintreten | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Atemwege
> COPD | Preisgestaltung und Erschwinglichkeitsförderung
> Für faire Medikamentenpreise eintreten | 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 Krankheiten im Allgemeinen | Preisgestaltung und Erschwinglichkeitsförderung
> An Preisüberprüfungsausschuss-Verhandlungen teilnehmen | 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. | Selten
> Seltene Erkrankungen: genetisch | Preisgestaltung und Erschwinglichkeitsförderung
> An Preisüberprüfungsausschuss-Verhandlungen teilnehmen | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Selten
> Seltene Krankheiten: Metabolisch/Lysosomal | Preisgestaltung und Erschwinglichkeitsförderung
> Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Atemwege
> Atemwege: die meisten Erkrankungen | Preisgestaltung und Erschwinglichkeitsförderung
> Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 5.000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Atemwege
> COPD | Preisgestaltung und Erschwinglichkeitsförderung
> Befürwortung der Aufnahme des Produkts in Erstattungslisten/nationale Arzneimittelverzeichnisse | 1.000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Krebs
> Krebs: Bauchspeicheldrüse | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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. | Patientenvertretung
> Patientenrechte | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endokrin
> Diabetes (Typ 1 und Typ 2) | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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. | Knochen
> Arthrose und Osteoporose | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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 Krankheiten im Allgemeinen | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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.] | Atemwege
> COPD | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 1.000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Selten
> Seltene Krankheiten: die meisten Typen | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 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. | Patientenvertretung
> Patientenrechte | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 10.000 | National | Sometimes | 119073823192 |
| They consult us. | Neurologisch
> Fibromyalgie | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 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. | Selten
> Seltene Krankheiten: die meisten Typen | Evidenzbasierter Patientenbeitrag
> Bereitstellung von Real-World-Evidence (RWE) für Regulierungsbehörden | 1.000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Selten
> Seltene Krankheiten: die meisten Typen | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patientengeschichten und Erfahrungsberichte aus erster Hand | 1.000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodegenerativ
> Alzheimer | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patientengeschichten und Erfahrungsberichte aus erster Hand | 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 Krankheiten im Allgemeinen | Evidenzbasierter Patientenbeitrag
> Erkenntnisse und Belege in politische Beiträge umwandeln | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Ältere Menschen
> Ältere Menschen | Diagnose und Medikamentenlieferung
> Sichere und wirksame Arzneimittelanwendung gewährleisten | 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. | Selten
> Von-Hippel-Lindau-Syndrom | Diagnose und Medikamentenlieferung
> Sichere und wirksame Arzneimittelanwendung gewährleisten | 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. | Patientenvertretung
> Patientenrechte | Diagnose und Medikamentenlieferung
> Sichere und wirksame Arzneimittelanwendung gewährleisten | 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]. | Ältere Menschen
> Ältere Menschen | Diagnose und Medikamentenlieferung
> An der Entwicklung klinischer Leitlinien mitwirken | 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. | Ältere Menschen
> Ältere Menschen | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Blutung
> Hämophilie | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 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. | Kardiovaskulär
> Herz-Kreislauf- & Herzerkrankungen | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Selten
> Seltene Krankheiten: die meisten Typen | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 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 Sklerose | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 5.000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurologisch
> Multiple Sklerose | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | HIV
> HIV | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 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 | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 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. | Patientenvertretung
> Patientenrechte | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 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: die meisten Erkrankungen | Institutionelle Governance
> Formalen Status als gemeinnützige oder wohltätige Einrichtung aufrechterhalten | 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 | Institutionelle Governance
> Formalen Status als gemeinnützige oder wohltätige Einrichtung aufrechterhalten | 5.000 | Local | Regularly | 119072832940 |
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Aktionen & Interessenvertretung
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