| 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 | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 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. | Potilasasianajo
> Potilaan oikeudet | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Hengitys
> Keuhkofibroosi | Sääntelyyhteistyö
> Yhteistyö sääntelyviranomaisten kanssa | 1 000 | National | Regularly | 119075356350 |
| IPT [Informe de Posicionamiento Terapéutico – Therapeutic Positioning Report]. | Neuromuskulaarinen
> Duchenne | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 5 000 | National | Regularly | 119045011464 |
| We participate in Health Technology Assessments for certain medicines. | Potilasasianajo
> Potilaan oikeudet | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Potilasasianajo
> Potilaan oikeudet | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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]. | Reumaattinen
> Lupus | Sääntelyyhteistyö
> Osallistu terveysteknologian arviointiin (HTA) ja korvattavuusarviointeihin | 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. | Potilasasianajo
> Potilaan oikeudet | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | We do not communicate with patients directly | National | Regularly | 119012238994 |
| Community of Madrid, Department of Education, Department of Health. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Vanhemmat ihmiset
> Vanhemmat ihmiset | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | We do not communicate with patients directly | National | Regularly | 119013803044 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Harvinainen
> Harvinaiset sairaudet: metaboliset/lysosomaalinen | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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 | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 100 000 | National | Regularly | 119036696548 |
| New therapeutic targets and State Health Council. | Reumaattinen
> Reumaattiset sairaudet: useimmat tyypit | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 10 000 | National | Regularly | 119062924366 |
| Ministry of Health. | Sydän- ja verisuonisairaudet
> Sydän- ja verisuonisairaudet | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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. | Potilasasianajo
> Potilaan oikeudet | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 10 000 | National | Sometimes | 119073823192 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Hengitys
> Keuhkofibroosi | Sääntelyyhteistyö
> Osallistu/fasilitoi kokouksia päättäjien/sääntelyviranomaisten kanssa | 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]. | Sydän- ja verisuonisairaudet
> Sydän- ja verisuonisairaudet | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 100 | National | No | 119053738286 |
| Through ACCU [Asociaciones de Crohn y Colitis Ulcerosa - Crohn’s and Ulcerative Colitis Associations] Spain. | Ruoansulatuskanava
> Ruoansulatuskanava: muu | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 1 000 | Regional | Sometimes | 119053970542 |
| FEDER [Federación Española de Enfermedades Raras – Spanish Federation of Rare Diseases] and EURORDIS [European Rare Disease Organisation]. | Harvinainen
> Wilsonin tauti | Sääntelyyhteistyö
> Muiden terveydenhuollon puolestapuhujien kanssa | 100 | National | Regularly | 119078667611 |
| Legislation pertaining to patients living with a rare disease. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 1 000 | National | Regularly | 119012112198 |
| Legal, policy, institutional, and corporate actions. | Potilasturvallisuus
> Iatrogeeninen | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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. | Ruoansulatuskanava
> Keliakia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 100 000 | National | Regularly | 119053766557 |
| Letters were submitted to the Ministry of Health. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 100 | National | Regularly | 119065350505 |
| In our country [Spain] it is challenging, but we do have channels through which we are able to communicate. | Maksa
> Maksasairaudet: siirrot | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 5 000 | National | Rarely | 119069515067 |
| IPTs [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports], meetings with the Ministry, and so forth. | Hengitys
> Keuhkofibroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 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]. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Vaikuta terveydenhuollon politiikkaan ja lainsäädäntöön | 100 000 | National | Regularly | 119078056907 |
| In the Community of Madrid, we are consulted on medicines and their importance for our patient community. | Verenvuoto
> Verenvuotohäiriöt: useimmat tyypit | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Krooninen
> Krooniset sairaudet yleisesti | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Ruoansulatuskanava
> Keliakia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Neurologinen
> Multippeliskleroosi | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistu julkisiin kuulemisiin ja konsultaatioihin | 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. | Ruoansulatuskanava
> Keliakia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 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 | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 5 000 | Local | Regularly | 119072832940 |
| Through the political action initiatives we undertake and promote. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Mobilisoi parlamentaarikkoja ja poliittisia johtajia | 100 | International | Regularly | 119078207611 |
| Legislation pertaining to patients living with a rare disease. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Puolusta potilassuojelulakeja ja -oikeuksia | 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. | Ruoansulatuskanava
> Keliakia | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Osallistua kansanterveyslainsäädännön laadintaan | 100 000 | National | Regularly | 119053766557 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Syöpä
> Syöpä: haima | Vaikuttaminen politiikkaan ja lainsäädäntöön
> Esteiden/poikkeavuuksien käsittely terveydenhuollossa | 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. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Puolusta oikeudenmukaista lääkkeiden hinnoittelua | 100 | National | Regularly | 119070360428 |
| Reimbursement of biological treatments. | Hengitys
> COPD | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Puolusta oikeudenmukaista lääkkeiden hinnoittelua | 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. | Krooninen
> Krooniset sairaudet yleisesti | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Osallistu hintaneuvottelulautakunnan neuvotteluihin | 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. | Harvinainen
> Harvinaiset sairaudet: geneettiset | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Osallistu hintaneuvottelulautakunnan neuvotteluihin | 100 | National | Regularly | 119070360428 |
| Meetings with the Directorate-General for the Common Benefits Package and Pharmacy. | Harvinainen
> Harvinaiset sairaudet: metaboliset/lysosomaalinen | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 100 | National | Rarely | 119022231157 |
| The priority is not so much determining the price, but securing reimbursement. | Hengitys
> Hengitys: useimmat tilat | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 5 000 | National | Regularly | 119054105408 |
| … Reimbursement of biological therapies. | Hengitys
> COPD | Hinnoittelu- ja kohtuuhintaisuusedunvalvonta
> Tuotteen sisällyttämisen edistäminen korvauslistoille/kansallisiin lääkeluetteloihin | 1 000 | National | Regularly | 119078128994 |
| Our objective is to advocate for the approval of all pancreatic cancer-related medicines in Spain. | Syöpä
> Syöpä: haima | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Potilasasianajo
> Potilaan oikeudet | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | We do not communicate with patients directly | National | Regularly | 119012238994 |
| We participate in the sampling of products entering public tender processes. | Endokriininen
> Diabetes (sekä tyyppi 1 että tyyppi 2) | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Luu
> Nivelrikko ja osteoporoosi | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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. | Krooninen
> Krooniset sairaudet yleisesti | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 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.] | Hengitys
> COPD | Parannetaan pääsyreittejä
> Helpota tasapuolista pääsyä lääkkeisiin/terveydenhuoltoon | 1 000 | National | Regularly | 119078128994 |
| Providing guidance from the patient perspective. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Näyttöön perustuva potilaspalaute
> Käytä potilastietoja päätöksenteon tukena | 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. | Potilasasianajo
> Potilaan oikeudet | Näyttöön perustuva potilaspalaute
> Käytä potilastietoja päätöksenteon tukena | 10 000 | National | Sometimes | 119073823192 |
| They consult us. | Neurologinen
> Fibromyalgia | Näyttöön perustuva potilaspalaute
> Käytä potilastietoja päätöksenteon tukena | 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. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Näyttöön perustuva potilaspalaute
> Anna tosielämän näyttöä (RWE) viranomaisille | 1 000 | National | Regularly | 119055416525 |
| ... Contributing real-world evidence and patient experience. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Näyttöön perustuva potilaspalaute
> Hyödynnä potilastarinoita ja kokemusperäisiä kertomuksia | 1 000 | National | Regularly | 119055416525 |
| Associations of family members of patients with Alzheimer's disease [interacting with drug regulators]. | Neurodegeneratiivinen
> Alzheimerin tauti | Näyttöön perustuva potilaspalaute
> Hyödynnä potilastarinoita ja kokemusperäisiä kertomuksia | 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. | Krooninen
> Krooniset sairaudet yleisesti | Näyttöön perustuva potilaspalaute
> Muunna todisteet ja oivallukset poliittisiksi panoksiksi | We do not communicate with patients directly | National | Regularly | 119052165521 |
| … We raise concerns on issues such as adverse drug reactions. | Vanhemmat ihmiset
> Vanhemmat ihmiset | Diagnoosi ja lääkkeiden toimitus
> Varmista turvallinen ja tehokas lääkkeiden käyttö | 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. | Harvinainen
> Von Hippel-Lindaun oireyhtymä | Diagnoosi ja lääkkeiden toimitus
> Varmista turvallinen ja tehokas lääkkeiden käyttö | 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. | Potilasasianajo
> Potilaan oikeudet | Diagnoosi ja lääkkeiden toimitus
> Varmista turvallinen ja tehokas lääkkeiden käyttö | 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]. | Vanhemmat ihmiset
> Vanhemmat ihmiset | Diagnoosi ja lääkkeiden toimitus
> Osallistu kliinisten ohjeiden kehittämiseen | 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. | Vanhemmat ihmiset
> Vanhemmat ihmiset | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | We do not communicate with patients directly | National | Regularly | 119013803044 |
| With public authorities. | Verenvuoto
> Hemofilia | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Sydän- ja verisuonisairaudet
> Sydän- ja verisuonisairaudet | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 100 | Local | No | 119053750627 |
| Providing guidance from the patient perspective. Exercising influence through formal participation or institutional advocacy. | Harvinainen
> Harvinaiset sairaudet: useimmat tyypit | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 5 000 | Local | Regularly | 119064523376 |
| We represent the interests of patients, but we do not intervene in pricing decisions. | Neurologinen
> Multippeliskleroosi | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 10 000 | Regional | Rarely | 119065344758 |
| We are members of the Patient Committee of the Valencian Community. | HIV
> HIV | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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 | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 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. | Potilasasianajo
> Potilaan oikeudet | Institutionaalinen hallinto
> Varmista edustus hallituksen neuvoa-antavissa elimissä | 10 000 | National | Sometimes | 119073823192 |
| The organisation has held Public Interest status, as designated by the Spanish Ministry of the Interior, since 2008. | Neurologinen
> Neurologinen: useimmat tilat | Institutionaalinen hallinto
> Ylläpidä virallista asemaa yleishyödyllisenä tai hyväntekeväisyysjärjestönä | 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 | Institutionaalinen hallinto
> Ylläpidä virallista asemaa yleishyödyllisenä tai hyväntekeväisyysjärjestönä | 5 000 | Local | Regularly | 119072832940 |
vuorovaikutukset
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