| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Foie
> Maladies du foie : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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 | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 1 000 | 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]. | Rare
> Maladies rares : métaboliques/lysosomales | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 1 000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Respiratoire
> Respiratoire : la plupart des affections | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 5 000 | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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. | Cœur
> Insuffisance cardiaque | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 10 000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Respiratoire
> Hypertension pulmonaire | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 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]. | Rein
> Maladies rénales | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | 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. | Immunisé
> Déficits immunitaires primaires | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 10 000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Cancer
> Cancer : sein | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rare
> Maladies rares : rein | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rare
> Maladies rares : génétiques | Partenariat réglementaire
> Contribuer aux soumissions d'autorisation de mise sur le marché | 100 000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrinien
> Diabète (types 1 et 2) | Partenariat réglementaire
> Implication dans les organismes d'élaboration de directives cliniques | 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. | Cancer
> Cancer : voies biliaires | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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]. | Rein
> Maladies rénales | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 1 000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Rare
> Mucoviscidose | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 10 000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | VIH
> VIH | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 1 000 | 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. | Immunisé
> Déficits immunitaires primaires | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 10 000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Saignement
> Hémophilie | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Endocrinien
> Diabète (types 1 et 2) | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Neurologique
> Sclérose en plaques | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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 | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 1 000 | 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]. | Rare
> Maladies rares : métaboliques/lysosomales | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 1 000 | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Rare
> Maladies rares : Foie | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Cœur
> Insuffisance cardiaque | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Cancer
> Cancer : sang | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 1 000 | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Cancer
> Cancer : la plupart des types | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 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). | Respiratoire
> Asthme et BPCO | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 5 000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Santé générale
> Obésité | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 10 000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Cardiovasculaire
> Cardiovasculaire : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Os
> Os : autre | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Os
> Os : autre | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Endocrinien
> Diabète (types 1 et 2) | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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). | Neurologique
> Sclérose en plaques | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 100 000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Déficience visuelle
> Déficience visuelle | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 1 000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Santé générale
> Obésité | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 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. | Cœur
> Insuffisance cardiaque | Influencer les politiques et la législation
> Traitement des obstacles/anomalies dans les soins médicaux | 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. | Neurologique
> Neurofibromatose (NF) | Influencer les politiques et la législation
> Traitement des obstacles/anomalies dans les soins médicaux | 1 000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Non spécifié
> Non spécifié | Plaidoyer pour la tarification et l'accessibilité financière
> Suivi et surveillance des prix des médicaments/pénuries de médicaments | 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. | Endocrinien
> Diabète (types 1 et 2) | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 1 000 | 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. | Endocrinien
> Diabète (types 1 et 2) | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Neurodégénératif
> Démence | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 100 000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Non spécifié
> Non spécifié | Plaidoyer pour la tarification et l'accessibilité financière
> Participer à des campagnes de sensibilisation | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Saignement
> Troubles hémorragiques : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Rare
> Mucoviscidose | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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]. | Cancer
> Cancer : sang | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | 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. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | 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. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | 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. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | 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. | Déficience visuelle
> Neuromyélite optique | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Cancer
> Cancer : cerveau | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Cancer
> Cancer : gynécologique | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | 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. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Cancer
> Cancer : gynécologique | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Respiratoire
> Asthme et BPCO | Amélioration des voies d'accès
> Plaider pour un accès plus large aux vaccins | 5 000 | 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. | Endocrinien
> Diabète (types 1 et 2) | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 1 000 | 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. | Déficience visuelle
> Neuromyélite optique | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 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]. | Cancer
> Cancer : sang | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 1 000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Neurologique
> Épilepsie | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 1 000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Os
> Os : autre | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 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]. | Rare
> Maladies rares : rein | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 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. | Rare
> Maladies rares : Foie | Diagnostic et livraison de médicaments
> Assurer une utilisation sûre et efficace des médicaments | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrinien
> Diabète (types 1 et 2) | Diagnostic et livraison de médicaments
> Participer à l'élaboration de recommandations cliniques | 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. | Neurologique
> Sclérose en plaques | Diagnostic et livraison de médicaments
> Participer à l'élaboration de recommandations cliniques | 100 000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Saignement
> Hémophilie | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Rare
> Maladies rares : métaboliques/lysosomales | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 1 000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 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. | Rare
> Maladies rares : génétiques | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cérébrovasculaire
> Trait | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 5 000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cérébrovasculaire
> Trait | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 5 000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Rhumatismal
> Maladies rhumatismales : la plupart des types | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrinien
> Diabète (types 1 et 2) | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 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). | Neurologique
> Sclérose en plaques | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 100 000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | Santé générale
> Prestation de soins de santé | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | 1 000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endocrinien
> Diabète (types 1 et 2) | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | Do not know | Regional | Sometimes | 115046244188 |