| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Liver
> Liver diseases: most types | Regulatory partnership
> Working with regulatory bodies | 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. | HIV
> HIV | Regulatory partnership
> Working with regulatory bodies | 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
> Rare diseases: metabolic/lysosomal | Regulatory partnership
> Working with regulatory bodies | 1,000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Respiratory
> Respiratory: most conditions | Regulatory partnership
> Working with regulatory bodies | 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. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Working with regulatory bodies | 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. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Working with regulatory bodies | 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. | Heart
> Heart failure | Regulatory partnership
> Working with regulatory bodies | 10,000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Respiratory
> Pulmonary hypertension | Regulatory partnership
> Working with regulatory bodies | 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]. | Kidney
> Kidney diseases | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Immune
> Primary immunodeficiencies | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Cancer
> Cancer: breast | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Rare diseases: kidney | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Rare disorders: genetic | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 100,000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrine
> Diabetes (both types 1 and 2) | Regulatory partnership
> Involvement with clinical guideline-setting bodies | 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: bile duct | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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]. | Kidney
> Kidney diseases | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 1,000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Rare
> Cystic fibrosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 10,000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | HIV
> HIV | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Immune
> Primary immunodeficiencies | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 10,000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Bleeding
> Haemophilia | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Endocrine
> Diabetes (both types 1 and 2) | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Neurological
> Multiple sclerosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | HIV
> HIV | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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
> Rare diseases: metabolic/lysosomal | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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
> Rare diseases: Liver | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Heart
> Heart failure | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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: blood | Regulatory partnership
> With other healthcare advocates | 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
> Rare diseases: most types | Regulatory partnership
> With other healthcare advocates | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Cancer
> Cancer: most types | Regulatory partnership
> With other healthcare advocates | 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). | Respiratory
> Asthma and COPD | Impacting policy and legislation
> Influence healthcare policy and legislation | 5,000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | General health
> Obesity | Impacting policy and legislation
> Influence healthcare policy and legislation | 10,000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Cardiovascular
> Cardiovascular: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bone
> Bone: other | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Rheumatic
> Rheumatic diseases: most types | Impacting policy and legislation
> Influence healthcare policy and legislation | 100,000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bone
> Bone: other | Impacting policy and legislation
> Participate in public hearings and 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. | Endocrine
> Diabetes (both types 1 and 2) | Impacting policy and legislation
> Participate in public hearings and 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). | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 100,000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Visual impairment
> Visual impairment | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 1,000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | General health
> Obesity | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 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. | Heart
> Heart failure | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 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. | Neurological
> Neurofibromatosis (NF) | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 1,000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Not Specified
> Not specified | Pricing and affordability advocacy
> Tracking and monitoring drug pricing/drug shortages | 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. | Endocrine
> Diabetes (both types 1 and 2) | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 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. | Endocrine
> Diabetes (both types 1 and 2) | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Neurodegenerative
> Dementia | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100,000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Not Specified
> Not specified | Pricing and affordability advocacy
> Engaging in awareness campaigns | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Bleeding
> Bleeding disorders: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Rare
> Cystic fibrosis | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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: blood | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Visual impairment
> Neuromyelitis Optica | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Cancer
> Cancer: brain | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Cancer
> Cancer: gynaecological | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Rheumatic
> Rheumatic diseases: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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: gynaecological | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Respiratory
> Asthma and COPD | Improving access pathways
> Advocate for wider vaccine access | 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. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Address disparities in access and management | 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. | Visual impairment
> Neuromyelitis Optica | Improving access pathways
> Address disparities in access and management | 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: blood | Improving access pathways
> Address disparities in access and management | 1,000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Neurological
> Epilepsy | Improving access pathways
> Address disparities in access and management | 1,000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bone
> Bone: other | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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
> Rare diseases: kidney | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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
> Rare diseases: Liver | Diagnosis and medicines delivery
> Ensure safe and effective medicine use | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrine
> Diabetes (both types 1 and 2) | Diagnosis and medicines delivery
> Participate in developing clinical guidelines | 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. | Neurological
> Multiple sclerosis | Diagnosis and medicines delivery
> Participate in developing clinical guidelines | 100,000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Rheumatic
> Rheumatic diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Bleeding
> Haemophilia | Institutional governance
> Ensure representation within governmental advisory bodies | 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
> Rare diseases: metabolic/lysosomal | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Ensure representation within governmental advisory bodies | 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
> Rare disorders: genetic | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovascular
> Stroke | Institutional governance
> Working effectively within multi-stakeholder networks | 5,000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovascular
> Stroke | Institutional governance
> Working effectively within multi-stakeholder networks | 5,000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Rheumatic
> Rheumatic diseases: most types | Institutional governance
> Working effectively within multi-stakeholder networks | 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. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrine
> Diabetes (both types 1 and 2) | Institutional governance
> Working effectively within multi-stakeholder networks | 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). | Neurological
> Multiple sclerosis | Institutional governance
> Working effectively within multi-stakeholder networks | 100,000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | General health
> Healthcare delivery | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 1,000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endocrine
> Diabetes (both types 1 and 2) | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | Do not know | Regional | Sometimes | 115046244188 |
interactions
actions & advocacy
31 mentions
