| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Lever
> Leversjukdomar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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 | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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]. | Sällsynt
> Sällsynta sjukdomar: metaboliska/lysosomala | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 1 000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Andning
> Andning: de flesta tillstånd | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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. | Hjärta
> Hjärtsvikt | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 10 000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Andning
> Pulmonell hypertension | Regulatoriskt partnerskap
> Arbeta med tillsynsmyndigheter | 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]. | Njure
> Njursjukdomar | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Immun
> Primära immunbristtillstånd | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 10 000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Cancer
> Cancer: bröst | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Sällsynt
> Sällsynta sjukdomar: njure | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i utvärderingar av medicinsk teknik (HTA) och ersättningsgranskningar | 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. | Sällsynt
> Sällsynta sjukdomar: genetiska | Regulatoriskt partnerskap
> Bidra till inlämningar för marknadsföringstillstånd | 100 000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endokrin
> Diabetes (både typ 1 och typ 2) | Regulatoriskt partnerskap
> Engagemang med organ för fastställande av kliniska riktlinjer | 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: gallgång | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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]. | Njure
> Njursjukdomar | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 1 000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Blödning
> Blödningsrubbningar: de flesta typer | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Sällsynt
> Cystisk fibros | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 10 000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | HIV
> HIV | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Immun
> Primära immunbristtillstånd | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 10 000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Blödning
> Hemofili | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Neurologisk
> Multipel skleros | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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 | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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]. | Sällsynt
> Sällsynta sjukdomar: metaboliska/lysosomala | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Sällsynt
> Sällsynta sjukdomar: Lever | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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. | Hjärta
> Hjärtsvikt | Regulatoriskt partnerskap
> Delta i/facilitera möten med beslutsfattare/tillsynsmyndigheter | 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: blod | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 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. | Sällsynt
> Sällsynta sjukdomar: de flesta typer | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Cancer
> Cancer: de flesta typer | Regulatoriskt partnerskap
> Med andra hälso- och sjukvårdsförespråkare | 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). | Andning
> Astma och KOL | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 5 000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Allmän hälsa
> Fetma | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 10 000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Kardiovaskulär
> Kardiovaskulärt: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Ben
> Ben: annat | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Påverka politik och lagstiftning
> Påverka hälso- och sjukvårdspolitik och lagstiftning | 100 000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Ben
> Ben: annat | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Påverka politik och lagstiftning
> Delta i offentliga utfrågningar och samråd | 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). | Neurologisk
> Multipel skleros | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 100 000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Synnedsättning
> Synnedsättning | Påverka politik och lagstiftning
> Mobilisera parlamentariker och politiska ledare | 1 000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Allmän hälsa
> Fetma | Påverka politik och lagstiftning
> Bidra till utformningen av folkhälsolagstiftning | 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. | Hjärta
> Hjärtsvikt | Påverka politik och lagstiftning
> Hantera hinder/avvikelser inom medicinsk vård | 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. | Neurologisk
> Neurofibromatosis (NF) | Påverka politik och lagstiftning
> Hantera hinder/avvikelser inom medicinsk vård | 1 000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Ej angivet
> Ej angivet | Påverkansarbete för prissättning och prisvärdhet
> Spårning och övervakning av läkemedelspriser/läkemedelsbrister | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Neurodegenerativ
> Demens | Påverkansarbete för prissättning och prisvärdhet
> Förespråkar inkludering av produkten i ersättningslistor/nationella läkemedelsförteckningar | 100 000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Ej angivet
> Ej angivet | Påverkansarbete för prissättning och prisvärdhet
> Engagera sig i medvetenhetskampanjer | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 1 000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Blödning
> Blödningsrubbningar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Sällsynt
> Cystisk fibros | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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: blod | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Synnedsättning
> Neuromyelitis optica | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Cancer
> Cancer: hjärna | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Cancer
> Cancer: gynekologisk | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 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: gynekologisk | Förbättra åtkomstvägar
> Underlätta rättvis tillgång till läkemedel/hälso- och sjukvård | 1 000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Andning
> Astma och KOL | Förbättra åtkomstvägar
> Förespråka bredare tillgång till vaccin | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 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. | Synnedsättning
> Neuromyelitis optica | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 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: blod | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 1 000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Neurologisk
> Epilepsi | Förbättra åtkomstvägar
> Åtgärda ojämlikheter i tillgång och hantering | 1 000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Ben
> Ben: annat | Förbättra åtkomstvägar
> Förbättra tillgången till sällsynta/ultrasällsynta terapier | 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]. | Sällsynt
> Sällsynta sjukdomar: njure | Förbättra åtkomstvägar
> Förbättra tillgången till sällsynta/ultrasällsynta terapier | 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. | Sällsynt
> Sällsynta sjukdomar: Lever | Diagnos och läkemedelsleverans
> Säkerställ säker och effektiv läkemedelsanvändning | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endokrin
> Diabetes (både typ 1 och typ 2) | Diagnos och läkemedelsleverans
> Delta i utvecklingen av kliniska riktlinjer | 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. | Neurologisk
> Multipel skleros | Diagnos och läkemedelsleverans
> Delta i utvecklingen av kliniska riktlinjer | 100 000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Blödning
> Hemofili | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Sällsynt
> Sällsynta sjukdomar: metaboliska/lysosomala | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 1 000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 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. | Sällsynt
> Sällsynta sjukdomar: genetiska | Institutionell styrning
> Se till att det finns representation inom statliga rådgivande organ | 100 000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovaskulär
> Linje | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 5 000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovaskulär
> Linje | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 5 000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisk
> Reumatiska sjukdomar: de flesta typer | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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. | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endokrin
> Diabetes (både typ 1 och typ 2) | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 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). | Neurologisk
> Multipel skleros | Institutionell styrning
> Arbeta effektivt inom nätverk med flera intressenter | 100 000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | Allmän hälsa
> Sjukvårdsutförande | Upprätthålla patienträttigheter/förbättra livskvalitet
> Skydda/förbättra patientupplevelsen | 1 000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endokrin
> Diabetes (både typ 1 och typ 2) | Upprätthålla patienträttigheter/förbättra livskvalitet
> Skydda/förbättra patientupplevelsen | Do not know | Regional | Sometimes | 115046244188 |