| 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 | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Défense des droits des patients
> Droits du patient | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoire
> Fibrose pulmonaire | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 1 000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromusculaire
> Duchenne | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Défense des droits des patients
> Droits du patient | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Défense des droits des patients
> Droits du patient | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Rhumatismal
> Lupus | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Défense des droits des patients
> Droits du patient | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Personnes âgées
> Personnes âgées | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | We do not communicate with patients directly | National | Regularly | 119013803044 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Rare
> Maladies rares : métaboliques/lysosomales | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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 | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 100 000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 10 000 | National | Regularly | 119062924366 |
| Ministry of Health. | Cardiovasculaire
> Maladies cardiovasculaires et cardiaques | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Défense des droits des patients
> Droits du patient | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoire
> Fibrose pulmonaire | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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]. | Cardiovasculaire
> Maladies cardiovasculaires et cardiaques | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Gastro-intestinal
> Gastro-intestinal : autre | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 1 000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Rare
> Maladie de Wilson | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Rare
> Maladies rares : génétiques | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Sécurité des patients
> Iatrogène | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Gastro-intestinal
> Cœliaque | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Rare
> Maladies rares : génétiques | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Foie
> Maladies du foie : transplantations | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 5 000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Respiratoire
> Fibrose pulmonaire | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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]. | Rare
> Maladies rares : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Saignement
> Troubles hémorragiques : la plupart des types | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Chronique
> Maladies chroniques en général | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Gastro-intestinal
> Cœliaque | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Gastro-intestinal
> Cœliaque | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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 | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 5 000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Rare
> Maladies rares : génétiques | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Rare
> Maladies rares : génétiques | Influencer les politiques et la législation
> Plaider pour des projets de loi et des droits de protection des patients | 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. | Gastro-intestinal
> Cœliaque | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cancer
> Cancer : pancréatique | Influencer les politiques et la législation
> Traitement des obstacles/anomalies dans les soins médicaux | 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. | Rare
> Maladies rares : génétiques | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Respiratoire
> BPCO | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 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. | Chronique
> Maladies chroniques en général | Plaidoyer pour la tarification et l'accessibilité financière
> Participer aux négociations du comité d'examen des prix | 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. | Rare
> Maladies rares : génétiques | Plaidoyer pour la tarification et l'accessibilité financière
> Participer aux négociations du comité d'examen des prix | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Rare
> Maladies rares : métaboliques/lysosomales | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Respiratoire
> Respiratoire : la plupart des affections | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 5 000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Respiratoire
> BPCO | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 1 000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Cancer
> Cancer : pancréatique | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Défense des droits des patients
> Droits du patient | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Os
> Arthrose et ostéoporose | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Chronique
> Maladies chroniques en général | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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.] | Respiratoire
> BPCO | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Rare
> Maladies rares : la plupart des types | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Défense des droits des patients
> Droits du patient | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 10 000 | National | Sometimes | 119073823192 |
| They consult us. | Neurologique
> Fibromyalgie | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Rare
> Maladies rares : la plupart des types | Contribution des patients fondée sur des données probantes
> Fournir des preuves du monde réel (RWE) aux agences réglementaires | 1 000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Rare
> Maladies rares : la plupart des types | Contribution des patients fondée sur des données probantes
> Exploiter les témoignages de patients et les récits d'expériences vécues | 1 000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodégénératif
> Alzheimer | Contribution des patients fondée sur des données probantes
> Exploiter les témoignages de patients et les récits d'expériences vécues | 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. | Chronique
> Maladies chroniques en général | Contribution des patients fondée sur des données probantes
> Traduire les preuves et les informations en contributions politiques | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Personnes âgées
> Personnes âgées | Diagnostic et livraison de médicaments
> Assurer une utilisation sûre et efficace des médicaments | 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. | Rare
> Syndrome de Von Hippel-Lindau | Diagnostic et livraison de médicaments
> Assurer une utilisation sûre et efficace des médicaments | 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. | Défense des droits des patients
> Droits du patient | Diagnostic et livraison de médicaments
> Assurer une utilisation sûre et efficace des médicaments | 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]. | Personnes âgées
> Personnes âgées | Diagnostic et livraison de médicaments
> Participer à l'élaboration de recommandations cliniques | 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. | Personnes âgées
> Personnes âgées | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Saignement
> Hémophilie | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Cardiovasculaire
> Maladies cardiovasculaires et cardiaques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Rare
> Maladies rares : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 5 000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 10 000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | VIH
> VIH | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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 | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Défense des droits des patients
> Droits du patient | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 10 000 | National | Sometimes | 119073823192 |
| The organisation has held Public Interest status, as designated by the Spanish Ministry of the Interior, since 2008. | Neurologique
> Neurologique : la plupart des affections | Gouvernance institutionnelle
> Maintenir le statut formel d'entité d'intérêt public ou caritative | 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. | VIH
> VIH | Gouvernance institutionnelle
> Maintenir le statut formel d'entité d'intérêt public ou caritative | 5 000 | Local | Regularly | 119072832940 |
interactions
actions et plaidoyer
19 mentions
