| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | National | Regularly | 115023591745 |
| Through submissions to AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] via the Technical Health Committee of the Ministry of Health. | VIH
> VIH | Asociación regulatoria
> Trabajando con organismos reguladores | 1000 | National | Regularly | 115050875230 |
| The organisation represents patients before national and European regulatory bodies, including AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and EMA [European Medicines Agency]. | Raro
> Enfermedades raras: metabólicas/lisosomales | Asociación regulatoria
> Trabajando con organismos reguladores | 1000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Respiratorio
> Respiratorio: la mayoría de las afecciones | Asociación regulatoria
> Trabajando con organismos reguladores | 5000 | National | Sometimes | 115052531440 |
| Yes. The association represents patients' interests before the institutions and regulatory authorities involved in decision-making processes related to healthcare policy, access to therapies, and the sustainability of the healthcare system. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | National | Regularly | 115057561938 |
| The association represents patient interests before the institutions and regulatory authorities involved in decision-making processes relating to health policy, access to therapies, and the sustainability of the healthcare system. In particular, it promotes dialogue with regulatory bodies, healthcare institutions, and health system stakeholders with the aim of contributing to the development of policies that ensure equitable and appropriate access to treatments for people living with rheumatological conditions. This encompasses direct engagement with AIFA [Agenzia Italiana del Farmaco — the Italian Medicines Agency], as well as with regional authorities where dedicated regional working groups on rheumatological and rare rheumatological diseases have been established. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | National | Regularly | 115057561938 |
| AISC [Associazione Italiana Scompensati Cardiaci – Italian Association of Heart Failure Patients] maintains frequent engagement with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and with national and regional decision-makers regarding the introduction and adoption of new medicinal products in cardiovascular diseases. | Corazón
> Insuficiencia cardíaca | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Respiratorio
> Hipertensión pulmonar | Asociación regulatoria
> Trabajando con organismos reguladores | 100 | National | Rarely | 115060569246 |
| Meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services]. | Riñón
> Enfermedades renales | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | Regional | Sometimes | 114997535217 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], CNS [Consiglio Nazionale della Sanità - National Health Council], the Ministry, Parliament, the Regions, and regulatory bodies. | Inmune
> Inmunodeficiencias primarias | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 10.000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Cáncer
> Cáncer: mama | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | We do not communicate with patients directly | National | Sometimes | 115035044046 |
| Letters were co-authored and submitted to AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] at the request of paediatric nephrologists, seeking compassionate use authorisation for investigational medicinal products. | Raro
> Enfermedades raras: riñón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100 | National | Rarely | 115057369547 |
| The association represents patient interests before the institutions and regulatory authorities involved in decision-making processes relating to health policy, access to therapies, and the sustainability of the healthcare system. In particular, it promotes dialogue with regulatory bodies, healthcare institutions, and health system stakeholders with the aim of contributing to the development of policies that ensure equitable and appropriate access to treatments for people living with rheumatological conditions. This encompasses direct engagement with AIFA [Agenzia Italiana del Farmaco — the Italian Medicines Agency], as well as with regional authorities where dedicated regional working groups on rheumatological and rare rheumatological diseases have been established. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Regularly | 115057561938 |
| We are members of the EMA [European Medicines Agency] multi-stakeholder advisory board, and we are frequently invited to participate in the scientific advice committee for the approval of medicines for mitochondrial diseases. | Raro
> Enfermedades raras: genéticas | Asociación regulatoria
> Contribuir a las presentaciones de Autorización de Comercialización | 100.000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrino
> Diabetes (tipos 1 y 2) | Asociación regulatoria
> Participación en organismos de elaboración de guías clínicas | 10.000 | National | No | 115028521635 |
| We requested meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] on two occasions; one such request, in 2023, was successful. | Cáncer
> Cáncer: conducto biliar | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Rarely | 114996625156 |
| Meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services]. | Riñón
> Enfermedades renales | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Raro
> Fibrosis quística | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | VIH
> VIH | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | Local | Regularly | 115006694528 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], CNS [Consiglio Nazionale della Sanità - National Health Council], the Ministry, Parliament, the Regions, and regulatory bodies. | Inmune
> Inmunodeficiencias primarias | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Sangrado
> Hemofilia | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100 | Regional | Regularly | 115037242647 |
| Participation in public consultations of AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], regional diabetes working groups, and contributions on access to CGM [Continuous Glucose Monitoring sensors sensors], insulin pumps, and innovative medicines. | Endocrino
> Diabetes (tipos 1 y 2) | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Regularly | 115038849633 |
| Through submissions to AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] via the Technical Health Committee of the Ministry of Health. | VIH
> VIH | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | National | Regularly | 115050875230 |
| The organisation represents patients before national and European regulatory bodies, including AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and EMA [European Medicines Agency]. | Raro
> Enfermedades raras: metabólicas/lisosomales | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | National | Regularly | 115050896715 |
| The association represents patient interests before the institutions and regulatory authorities involved in decision-making processes relating to health policy, access to therapies, and the sustainability of the healthcare system. In particular, it promotes dialogue with regulatory bodies, healthcare institutions, and health system stakeholders with the aim of contributing to the development of policies that ensure equitable and appropriate access to treatments for people living with rheumatological conditions. This encompasses direct engagement with AIFA [Agenzia Italiana del Farmaco — the Italian Medicines Agency], as well as with regional authorities where dedicated regional working groups on rheumatological and rare rheumatological diseases have been established. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Regularly | 115057561938 |
| The organisation [in Italy] actively engaged in challenging the withdrawal of a marketing authorisation for a medicinal product. It contributed to the submission of formal representations to the European Commission urging reconsideration of the withdrawal. | Raro
> Enfermedades raras: Hígado | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100 | National | Rarely | 115057832320 |
| AISC [Associazione Italiana Scompensati Cardiaci – Italian Association of Heart Failure Patients] maintains frequent engagement with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and with national and regional decision-makers regarding the introduction and adoption of new medicinal products in cardiovascular diseases. | Corazón
> Insuficiencia cardíaca | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Regularly | 115057865983 |
| We collaborate with other patient associations of a similar nature to advocate for the approval and release of medicines required for our condition. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Con otros defensores de la salud | 1000 | National | Rarely | 115006753491 |
| Through the UNIAMO [Unione Italiana delle Associazioni di Malati – Italian Federation of Rare Disease Patient Organisations] Federation, with which we are affiliated. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Con otros defensores de la salud | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Con otros defensores de la salud | 100 | National | Regularly | 115057092350 |
| We are actively campaigning for the amendment or abolition of Nota 99 [Nota 99 is the Italian Medicines Agency (AIFA) reimbursement guideline for Chronic Obstructive Pulmonary Disease (COPD) maintenance therapies. It regulates the prescription of inhalers, ensuring appropriate diagnosis through spirometry while detailing which treatments GPs can initiate or repeat]. We are also campaigning for vaccination against Respiratory Syncytial Virus (RSV). | Respiratorio
> Asma y EPOC | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 5000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Salud general
> Obesidad | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 10.000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Cardiovascular
> Cardiovascular: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Hueso
> Hueso: otro | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | National | Regularly | 115037246562 |
| Yes. The association represents patients' interests before the institutions and regulatory authorities involved in decision-making processes related to healthcare policy, access to therapies, and the sustainability of the healthcare system. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Hueso
> Hueso: otro | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100 | National | Regularly | 115037246562 |
| Participation in public consultations of AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], regional diabetes working groups, and contributions on access to CGM [Continuous Glucose Monitoring sensors sensors], insulin pumps, and innovative medicines. | Endocrino
> Diabetes (tipos 1 y 2) | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco - Italian Medicines Agency]. Relationship with regional health authorities. Reference clinical care pathways. Relationship with Ministries (Health, Welfare, Disability). | Neurológico
> Esclerosis múltiple | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 100.000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Discapacidad visual
> Discapacidad visual | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 1000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Salud general
> Obesidad | Impactando en políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 10.000 | National | Regularly | 115012927513 |
| AISC [Associazione Italiana Scompensati Cardiaci – Italian Association of Heart Failure Patients] maintains frequent engagement with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] and with national and regional decision-makers regarding the introduction and adoption of new medicinal products in cardiovascular diseases. | Corazón
> Insuficiencia cardíaca | Impactando en políticas y legislación
> Abordando barreras/anomalías en la atención médica | 10.000 | National | Regularly | 115057865983 |
| Market authorisation for "Koselugo" [used to treat neurofibromatosis type 1 (NF1)] should be extended to adult patients, given that it is currently approved only for paediatric cases where surgery is not an option. | Neurológico
> Neurofibromatosis (NF) | Impactando en políticas y legislación
> Abordando barreras/anomalías en la atención médica | 1000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Sin especificar
> Sin especificar | Defensa de precios y asequibilidad
> Seguimiento y monitorización de precios de medicamentos/escasez de medicamentos | 100 | Local | Regularly | 115037563159 |
| Specifically at the level of the regional health authority, we have engaged in advocacy for the extension of the prescribability of Baqsimi (nasal glucagon) to be also reimbursable for adult diabetic patients. | Endocrino
> Diabetes (tipos 1 y 2) | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 1000 | Local | Sometimes | 115023236354 |
| Participation in public consultations of AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], regional diabetes working groups, and contributions on access to CGM [Continuous Glucose Monitoring sensors sensors], insulin pumps, and innovative medicines. | Endocrino
> Diabetes (tipos 1 y 2) | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Neurodegenerativo
> Demencia | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100.000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Sin especificar
> Sin especificar | Defensa de precios y asequibilidad
> Participar en campañas de concienciación | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Raro
> Fibrosis quística | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 10.000 | National | Regularly | 115005109524 |
| We collaborate with other patient associations of a similar nature to advocate for the approval and release of medicines required for our condition [blood cancers]. | Cáncer
> Cáncer: sangre | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Rarely | 115006753491 |
| Extension of the indications for the use of Baqsimi, indicated for the treatment of severe hypoglycaemia in adults, adolescents, and children aged one year and above with diabetes mellitus. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | Regional | Sometimes | 115021346889 |
| At the regional health authority level in particular, advocacy efforts were undertaken to extend the prescribability of Baqsimi (nasal glucagon) to include reimbursement for adult patients with diabetes. Additionally, participation in the competitive tendering process for diabetes medical devices and supplies — including reagent test strips, continuous glucose monitoring sensors, and insulin pumps — was pursued. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | Local | Sometimes | 115023236354 |
| At the regional health authority level in particular, advocacy efforts were undertaken to extend the prescribability of Baqsimi (nasal glucagon) to include reimbursement for adult patients with diabetes. Additionally, participation in the competitive tendering process for diabetes medical devices and supplies — including reagent test strips, continuous glucose monitoring sensors, and insulin pumps — was pursued. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | Local | Sometimes | 115023236354 |
| The association is at the forefront of efforts to ensure that all patients receive the appropriate therapy and that treatment is applied consistently at the national level. | Discapacidad visual
> Neuromielitis Óptica | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Cáncer
> Cáncer: cerebro | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Cáncer
> Cáncer: ginecológico | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Sometimes | 115055638865 |
| The association represents patient interests before the institutions and regulatory authorities involved in decision-making processes relating to health policy, access to therapies, and the sustainability of the healthcare system. In particular, it promotes dialogue with regulatory bodies, healthcare institutions, and health system stakeholders with the aim of contributing to the development of policies that ensure equitable and appropriate access to treatments for people living with rheumatological conditions. This encompasses direct engagement with AIFA [Agenzia Italiana del Farmaco — the Italian Medicines Agency], as well as with regional authorities where dedicated regional working groups on rheumatological and rare rheumatological diseases have been established. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Regularly | 115057561938 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] or regional health authorities regarding delays in the market access of medicines. | Cáncer
> Cáncer: ginecológico | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Respiratorio
> Asma y EPOC | Mejora de las vías de acceso
> Abogar por un acceso más amplio a las vacunas | 5000 | National | Regularly | 114996865765 |
| Specifically at the level of the regional health authority, we have engaged in advocacy for the extension of the prescribability of Baqsimi (nasal glucagon) to be also reimbursable for adult diabetic patients. | Endocrino
> Diabetes (tipos 1 y 2) | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 1000 | Local | Sometimes | 115023236354 |
| The association is at the forefront of efforts to ensure that all patients receive the appropriate therapy and that treatment is applied consistently at the national level. | Discapacidad visual
> Neuromielitis Óptica | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 100 | National | Regularly | 115024933081 |
| We are an integral part of the Innovative Medicines Group of the Veneto Region [part of Veneto Region's governance structure for evaluating and managing access to innovative medicines]. | Cáncer
> Cáncer: sangre | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 1000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Neurológico
> Epilepsia | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 1000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Hueso
> Hueso: otro | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 100 | National | Regularly | 115037246562 |
| Letters were co-authored and submitted to AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] at the request of paediatric nephrologists, seeking compassionate use authorisation for investigational medicinal products [for rare kidney conditions]. | Raro
> Enfermedades raras: riñón | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 100 | National | Rarely | 115057369547 |
| The organisation [in Italy] actively engaged in challenging the withdrawal of a marketing authorisation for a medicinal product. It contributed to the submission of formal representations to the European Commission urging reconsideration of the withdrawal. | Raro
> Enfermedades raras: Hígado | Diagnóstico y entrega de medicamentos
> Garantizar un uso seguro y eficaz de los medicamentos | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrino
> Diabetes (tipos 1 y 2) | Diagnóstico y entrega de medicamentos
> Participar en el desarrollo de guías clínicas | 10.000 | National | No | 115028521635 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco - Italian Medicines Agency]. Relationship with regional health authorities. Reference clinical care pathways. | Neurológico
> Esclerosis múltiple | Diagnóstico y entrega de medicamentos
> Participar en el desarrollo de guías clínicas | 100.000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100.000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Sangrado
> Hemofilia | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Regional | Regularly | 115043798242 |
| Represent patients before national and European regulatory bodies — including AIFA [Agenzia Italiana del Farmaco, the Italian Medicines Agency] and EMA [European Medicines Agency] — as well as national health institutions and local authorities. | Raro
> Enfermedades raras: metabólicas/lisosomales | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 1000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Local | Rarely | 115060756578 |
| We are members of the EMA [European Medicines Agency] multi-stakeholder advisory board, and we are frequently invited to participate in the scientific advice committee for the approval of medicines for mitochondrial diseases. | Raro
> Enfermedades raras: genéticas | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100.000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovascular
> Trazo | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 5000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovascular
> Trazo | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 5000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumático
> Enfermedades reumáticas: la mayoría de los tipos | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100.000 | National | Regularly | 115031446886 |
| Participation in public consultations of AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency], regional diabetes working groups, and contributions on access to CGM [Continuous Glucose Monitoring sensors sensors], insulin pumps, and innovative medicines. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrino
> Diabetes (tipos 1 y 2) | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100 | Local | Regularly | 115037426004 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco - Italian Medicines Agency]. Relationship with regional health authorities. Reference clinical care pathways. Relationship with Ministries (Health, Welfare, Disability). | Neurológico
> Esclerosis múltiple | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100.000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | Salud general
> Prestación de servicios sanitarios | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | 1000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endocrino
> Diabetes (tipos 1 y 2) | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | Do not know | Regional | Sometimes | 115046244188 |