A strategic forum to shape the future of Rare Disease governance in Italy
TEDDY Network is pleased to announce its participation in the 1st National Summit on Rare Disease Policies, taking place on 15 – 16 June 2026 at the Ministry of Health Auditorium in Rome (Viale Giorgio Ribotta 5), Italy. Organised by the Italian Ministry of Health and the National Committee for Rare Diseases – CoNaMaR as a structured forum for dialogue among institutions, policymakers, researchers, healthcare professionals, patient organisations, and industry representatives, the Summit on Rare Disease Policies aims to address the challenges of rare disease policies in a context of increasingly complex healthcare needs and the need to ensure equitable access to care and innovation.
At the heart of the initiative remains the person living with a rare disease, while discussions will contribute to shaping a shared vision at both national and European levels. As highlighted by Undersecretary of Health On. Marcello Gemmato, Italy has developed an internationally recognised model in the field of rare diseases, built on a qualified network of centres, scientific expertise and competences as well as the active involvement of patient associations.
TEDDY Network Participation
Eleonora Passeri, member of TEDDY Network’s Board of Directors and Vice Coordinator of the National Committee for Rare Diseases, will participate as a speaker on the first day of the Summit in the session “Role and Objectives of the National Committee for Rare Diseases – CoNaMaR” together with Ettore Ruggi d’Aragona, Coordinator of the CoNaMaR. On the second day, she will also contribute as a speaker in Thematic Session V – “From Contextual Analysis to Proposals for Italy and Europe”.
Eleonora Passeri is also President of Rare Special Powers (RSP APS), a TEDDY Network member organisation that collaborates with local communities to raise awareness of rare diseases. She is also a member of the TEDDY Working Group on Engagement and Advocacy, contributing to initiatives that promote patient and public involvement across the Network. Within this framework, RSP APS established KIDS Umbria, a Young Persons Advisory Group (YPAG) within the TEDDY KIDS Network, promoting the engagement of children and young people in activities related to research and healthcare.
Strategic documents, the “Carta di Roma/Rome Charter”, and the Proposal for Europe are currently being developed and will include recommendations and proposals at both national and European levels. The “Rome Charter” will subsequently be made available in English. TEDDY Network has actively contributed to its development.
How to participate in the 1st National Summit on Rare Disease Policies
To participate in person, registration is required via the following link: https://forms.cloud.microsoft/e/bM8jYSweyM
To learn more about the 1st National Summit on Rare Disease Policies and access the full event agenda, please consult the official Ministry of Health event page:
The Summit will also be streamed live on both days of the event: on 15 June from 2:00 PM and on 16 June from 9:45 AM. Information on how to join the live webcast, including the webinar access links, is available on the official event page.
For a detailed overview of the Summit’s sessions, speakers, and thematic discussions, please consult the official agenda available here: [agenda link].