| The Ministry of Health, the Regions, and AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Lever
> Leverziekten: de meeste soorten | Regelgevend partnerschap
> Werken met regelgevende instanties | 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 | Regelgevend partnerschap
> Werken met regelgevende instanties | 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]. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Regelgevend partnerschap
> Werken met regelgevende instanties | 1.000 | National | Regularly | 115050896715 |
| Agenas [Agenzia Nazionale per i Servizi Sanitari Regionali – National Agency for Regional Health Services], Ministry of Health, Lazio Region. | Respiratoir
> Ademhaling: de meeste aandoeningen | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Regelgevend partnerschap
> Werken met regelgevende instanties | 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. | Hart
> Hartfalen | Regelgevend partnerschap
> Werken met regelgevende instanties | 10.000 | National | Regularly | 115057865983 |
| Approval of medicinal products by AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Respiratoir
> Pulmonale hypertensie | Regelgevend partnerschap
> Werken met regelgevende instanties | 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]. | Nier
> Nierziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Immuun
> Primaire immuundeficiënties | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Regularly | 115020417471 |
| AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Kanker
> Kanker: borst | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Zeldzaam
> Zeldzame ziekten: nier | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 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. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Regelgevend partnerschap
> Bijdragen aan indieningen voor Handelsvergunningen | 100.000 | International | Regularly | 119078073632 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrien
> Diabetes (zowel type 1 als type 2) | Regelgevend partnerschap
> Betrokkenheid bij organen die klinische richtlijnen opstellen | 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. | Kanker
> Kanker: galgang | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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]. | Nier
> Nierziekten | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 1.000 | Regional | Sometimes | 114997535217 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Zeldzaam
> Cystische fibrose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Regularly | 115005109524 |
| Through the Ministry of Health and the Lombardy Region. | HIV
> HIV | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Immuun
> Primaire immuundeficiënties | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Regularly | 115020417471 |
| We engage in dialogue with the Regional Authority and with the ASP [Aziende Sanitarie Provinciali – Provincial Health Authorities]. | Bloeding
> Hemofilie | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 100 | Local | Sometimes | 115037371533 |
| Audit and relationship with Italian regulatory AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency]. | Neurologisch
> Multiple sclerose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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 | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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]. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Zeldzaam
> Zeldzame ziekten: Lever | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Hart
> Hartfalen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Met andere zorgadvocaten | 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. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Met andere zorgadvocaten | 100 | National | Regularly | 115055436186 |
| Through a network of associations. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Met andere zorgadvocaten | 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). | Respiratoir
> Astma en COPD | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 5.000 | National | Regularly | 114996865765 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Algemene gezondheid
> Obesitas | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 10.000 | National | Regularly | 115012927513 |
| Cardiovascular Alliance — Ministry of Health. | Cardiovasculair
> Cardiovasculair: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100 | Regional | Sometimes | 115028352096 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bot
> Bot: overig | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100.000 | National | Regularly | 115057561938 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bot
> Bot: overig | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 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). | Neurologisch
> Multiple sclerose | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 100.000 | National | Regularly | 115038849633 |
| Cross-Party Parliamentary Group — IVT [Intravitreal Therapy] Technical Working Group. Cataract Technical Working Group — Regional Partnerships — Local Activities. | Visuele beperking
> Visuele beperking | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 1.000 | National | Regularly | 115056238448 |
| Active participation in the drafting and approval of legislation in support of the disease area. | Algemene gezondheid
> Obesitas | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 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. | Hart
> Hartfalen | Beleid en wetgeving beïnvloeden
> Barrières/anomalieën in de medische zorg aanpakken | 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. | Neurologisch
> Neurofibromatose (NF) | Beleid en wetgeving beïnvloeden
> Barrières/anomalieën in de medische zorg aanpakken | 1.000 | National | Sometimes | 115060431887 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Niet opgegeven
> Niet opgegeven | Pleitbezorging voor prijsstelling en betaalbaarheid
> Tracking en monitoring van geneesmiddelenprijzen/geneesmiddelentekorten | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 100 | Local | Sometimes | 115037371533 |
| Our work focuses on securing reimbursement for medicines, not on pricing. | Neurodegeneratief
> Dementie | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 100.000 | National | Rarely | 115060441597 |
| Organisation of educational camps, disease prevention, regulatory-compliant monitoring [in Italy], and waiting list management. | Niet opgegeven
> Niet opgegeven | Pleitbezorging voor prijsstelling en betaalbaarheid
> Deelnemen aan bewustmakingscampagnes | 100 | Local | Regularly | 115037563159 |
| Competitive tender for diabetes medical devices and supplies. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | Regional | Rarely | 114997517950 |
| We request meetings with regional authorities and hospital management bodies responsible for pharmaceutical distribution. | Bloeding
> Bloedingsstoornissen: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100 | Regional | Sometimes | 114997584898 |
| Through meetings with AIFA [Agenzia Italiana del Farmaco – Italian Medicines Agency] to safeguard the continued availability of medicines. | Zeldzaam
> Cystische fibrose | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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]. | Kanker
> Kanker: bloed | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Visuele beperking
> Neuromyelitis Optica | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100 | National | Regularly | 115024933081 |
| Meetings with FG [Focus Group] to improve community-based diabetology services. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100 | Local | Sometimes | 115032223368 |
| We are seeking early access for the drug vorasidenib [oral cancer therapy for people with gliomas]. | Kanker
> Kanker: hersenen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100 | National | Sometimes | 115050882510 |
| Formal request letters to expedite access to medicines. | Kanker
> Kanker: gynaecologisch | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Kanker
> Kanker: gynaecologisch | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | National | Rarely | 115060470442 |
| We are campaigning for vaccination against Respiratory Syncytial Virus (RSV) [in Italy]. | Respiratoir
> Astma en COPD | Toegangspaden verbeteren
> Pleit voor bredere toegang tot vaccins | 5.000 | National | Regularly | 114996865765 |
| Specifically at the level of the regional health authority, we have engaged in advocacy for the extension of the prescribability of Baqsimi (nasal glucagon) to be also reimbursable for adult diabetic patients. | Endocrien
> Diabetes (zowel type 1 als type 2) | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 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. | Visuele beperking
> Neuromyelitis Optica | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 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]. | Kanker
> Kanker: bloed | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 1.000 | National | Regularly | 115053421236 |
| Regional disparities in access to treatment and enrolment in therapeutic management plans. | Neurologisch
> Epilepsie | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 1.000 | Regional | Sometimes | 115063172483 |
| By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly. | Bot
> Bot: overig | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 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]. | Zeldzaam
> Zeldzame ziekten: nier | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 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. | Zeldzaam
> Zeldzame ziekten: Lever | Diagnose en medicijnbezorging
> Zorg voor veilig en effectief medicijngebruik | 100 | National | Rarely | 115057832320 |
| Our regional representatives participate in the regional diabetes technical working groups. | Endocrien
> Diabetes (zowel type 1 als type 2) | Diagnose en medicijnbezorging
> Deelnemen aan het ontwikkelen van klinische richtlijnen | 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. | Neurologisch
> Multiple sclerose | Diagnose en medicijnbezorging
> Deelnemen aan het ontwikkelen van klinische richtlijnen | 100.000 | National | Regularly | 115038849633 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100 | Regional | Rarely | 115019671886 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100.000 | National | Regularly | 115031446886 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100 | Local | Regularly | 115037426004 |
| We maintain regular contact with the relevant offices of the Tuscany Regional Authority. | Bloeding
> Hemofilie | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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. | Zeldzaam
> Zeldzame ziekten: metabolisch/lysosomaal | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 1.000 | National | Regularly | 115050896715 |
| In an advisory capacity, when consulted by the local and regional health authority (Azienda Sanitaria Locale). | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 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. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100.000 | International | Regularly | 119078073632 |
| By participating in the regional coordination body that sits on the regional working table. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 100 | Regional | Rarely | 115019671886 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovasculair
> Lijn | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 5.000 | National | Regularly | 115019690819 |
| Participated alongside Public Institutions in the Stroke Observatory. | Cerebrovasculair
> Lijn | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 5.000 | National | Regularly | 115019690819 |
| Regional health councillors, prescribing physicians, hospital pharmacists, regional drug directors, and representation at regional stakeholder forums. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 100 | Local | Sometimes | 115037371533 |
| We collaborate with institutional decision-makers, policymakers, and clinicians within a technical working group. | Endocrien
> Diabetes (zowel type 1 als type 2) | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 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). | Neurologisch
> Multiple sclerose | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 100.000 | National | Regularly | 115038849633 |
| Healthcare protection, consumer protection, and other related areas. | Algemene gezondheid
> Gezondheidszorgverlening | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | 1.000 | Regional | Regularly | 115038525050 |
| Documentation requirements for the renewal of driving licences for individuals with diabetes. | Endocrien
> Diabetes (zowel type 1 als type 2) | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | Do not know | Regional | Sometimes | 115046244188 |