| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Lever
> Leversykdommer: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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 | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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]. | Sjelden
> Sjeldne sykdommer: metabolske/lysosomale | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 1 000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Respiratorisk
> Luftveier: de fleste tilstander | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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
> Revmatiske sykdommer: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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
> Revmatiske sykdommer: de fleste typer | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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. | Hjerte
> Hjertesvikt | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 10 000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Respiratorisk
> Pulmonal hypertensjon | Regulatorisk partnerskap
> Samarbeid med regulatoriske myndigheter | 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]. | Nyre
> Nyresykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Primære immundefekter | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 10 000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Kreft
> Kreft: bryst | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Sjelden
> Sjeldne sykdommer: nyre | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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
> Revmatiske sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Sjelden
> Sjeldne lidelser: genetisk | Regulatorisk partnerskap
> Bidra til innsendinger for markedsføringstillatelse | 100 000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endokrin
> Diabetes (både type 1 og type 2) | Regulatorisk partnerskap
> Involvering med organer for utarbeidelse av kliniske retningslinjer | 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. | Kreft
> Kreft: gallegang | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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]. | Nyre
> Nyresykdommer | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 1 000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Sjelden
> Cystisk fibrose | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 10 000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | HIV
> HIV | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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
> Primære immundefekter | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 10 000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Blødning
> Hemofili | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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 type 1 og type 2) | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Nevrologisk
> Multippel sklerose | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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 | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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]. | Sjelden
> Sjeldne sykdommer: metabolske/lysosomale | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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
> Revmatiske sykdommer: de fleste typer | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Sjelden
> Sjeldne sykdommer: Lever | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Hjerte
> Hjertesvikt | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Kreft
> Kreft: blod | Regulatorisk partnerskap
> Med andre helseadvokater | 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. | Sjelden
> Sjeldne sykdommer: de fleste typer | Regulatorisk partnerskap
> Med andre helseadvokater | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Med andre helseadvokater | 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). | Respiratorisk
> Astma og KOLS | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 5 000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Generell helse
> Fedme | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 10 000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Kardiovaskulær
> Kardiovaskulær: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bein
> Ben: annet | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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
> Revmatiske sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 100 000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bein
> Ben: annet | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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 type 1 og type 2) | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 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). | Nevrologisk
> Multippel sklerose | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 100 000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Synshemming
> Synshemming | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 1 000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Generell helse
> Fedme | Påvirkning av politikk og lovgivning
> Bidra til utarbeidelse av folkehelseregelverket | 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. | Hjerte
> Hjertesvikt | Påvirkning av politikk og lovgivning
> Håndtering av barrierer/anomalier i medisinsk behandling | 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. | Nevrologisk
> Nevrofibromatose (NF) | Påvirkning av politikk og lovgivning
> Håndtering av barrierer/anomalier i medisinsk behandling | 1 000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Ikke spesifisert
> Ikke spesifisert | Prising og tilgjengelighetsadvokatur
> Sporing og overvåking av legemiddelpriser/legemiddelmangel | 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 type 1 og type 2) | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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 type 1 og type 2) | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Nevrodegenerativ
> Demens | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 100 000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Ikke spesifisert
> Ikke spesifisert | Prising og tilgjengelighetsadvokatur
> Engasjere seg i bevissthetskampanjer | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endokrin
> Diabetes (både type 1 og type 2) | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 1 000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Blødning
> Blødningsforstyrrelser: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Sjelden
> Cystisk fibrose | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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]. | Kreft
> Kreft: blod | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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 type 1 og type 2) | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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 type 1 og type 2) | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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 type 1 og type 2) | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Synshemming
> Neuromyelitis optica | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endokrin
> Diabetes (både type 1 og type 2) | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Kreft
> Kreft: hjerne | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Kreft
> Kreft: gynekologisk | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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
> Revmatiske sykdommer: de fleste typer | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Kreft
> Kreft: gynekologisk | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 1 000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Respiratorisk
> Astma og KOLS | Forbedrer tilgangsveier
> Gå inn for bredere vaksinetilgang | 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 type 1 og type 2) | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 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. | Synshemming
> Neuromyelitis optica | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 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]. | Kreft
> Kreft: blod | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 1 000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Nevrologisk
> Epilepsi | Forbedrer tilgangsveier
> Adresser ulikheter i tilgang og administrasjon | 1 000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bein
> Ben: annet | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne 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]. | Sjelden
> Sjeldne sykdommer: nyre | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne 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. | Sjelden
> Sjeldne sykdommer: Lever | Diagnose og medisinlevering
> Sikre trygg og effektiv legemiddelbruk | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endokrin
> Diabetes (både type 1 og type 2) | Diagnose og medisinlevering
> Delta i utvikling av kliniske retningslinjer | 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. | Nevrologisk
> Multippel sklerose | Diagnose og medisinlevering
> Delta i utvikling av kliniske retningslinjer | 100 000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endokrin
> Diabetes (både type 1 og type 2) | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisk
> Revmatiske sykdommer: de fleste typer | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endokrin
> Diabetes (både type 1 og type 2) | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Blødning
> Hemofili | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Sjelden
> Sjeldne sykdommer: metabolske/lysosomale | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 1 000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endokrin
> Diabetes (både type 1 og type 2) | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Sjelden
> Sjeldne lidelser: genetisk | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 100 000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endokrin
> Diabetes (både type 1 og type 2) | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovaskulær
> Strek | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 5 000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovaskulær
> Strek | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 5 000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisk
> Revmatiske sykdommer: de fleste typer | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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 type 1 og type 2) | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endokrin
> Diabetes (både type 1 og type 2) | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 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). | Nevrologisk
> Multippel sklerose | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | 100 000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | Generell helse
> Helsetjenester | Ivaretakelse av pasientrettigheter/forbedring av livskvalitet
> Beskytte/forbedre pasientopplevelsen | 1 000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endokrin
> Diabetes (både type 1 og type 2) | Ivaretakelse av pasientrettigheter/forbedring av livskvalitet
> Beskytte/forbedre pasientopplevelsen | Do not know | Regional | Sometimes | 115046244188 |