Our governance

Since 2022 we have been officially recognized as a Third Sector Entity (ETS), registered in the National Single Register (RUNTS).  

Our Statute defines the mission, governance structure and principles that guide all activities. In 2023, the Statute was updated to also include the production and distribution of advanced therapies, a natural evolution of our translational research model. 

Fondazione Telethon operates through a transparent and well-structured governance system designed to ensure accountability and effectiveness in pursuing its mission. 

Responsible for the overall management of the Foundation, both ordinary and extraordinary. It is composed of 7 to 15 members, appointed for three years. The Board sets strategic direction, approves plans and oversees implementation. Current members:  

The President legally represents the Foundation, ensures the implementation of the Board’s resolutions and provides overall supervision. The Vice-President steps in whenever the President is unavailable. Both are elected by the Board for a three-year term. 

The CEO Leads the Foundation’s operational structure in line with the Board’s guidance, coordinating strategic and managerial activities across all areas.  

An independent body of Italian and international experts in biomedicine: it evaluates all research project proposals, and its assessments are binding in defining merit rankings and allocating funds. For more details, consult the relevant section of the Multiround and Fondazione Telethon-Cariplo calls (link alle pagine). 

Composed of international experts, it supports the Board of Directors with strategic advice in the biomedical field, helping to guide research and development choices. Current Members:  

Supervises management, the Foundation’s compliance with social objectives, and the adequacy of the organizational and administrative structure. It also validates the annual financial and social reports. 

Ensures the continuous updating and application of the Organizational Model and Code of Ethics. It reports regularly to the General Director and, at least once a year, to both the Board of Directors and the Control Body. 

This governance model guarantees that Fondazione Telethon acts with rigor, transparency, and independence, ensuring that every resource entrusted to us is used to maximize impact for people with rare genetic diseases. 

Read also about the Gender Equality Plan of Fondazione Telethon ETS 

On 15th May 2023 has been submitted to EMA the request for the MAH (Marketing Authorization Holder) transfer from Orchard to Fondazione Telethon ETS, which will lead for the first time the Organization to manage a drug on the market, Strimvelis. Therefore, to cope with the afore mentioned task, Fondazione Telethon ETS has appointed: