To steer this program and guarantee the neutrality, quality and transparency of its work, a multi-level governance structure has been defined:

Board of Stakeholders (BoS), made up of representatives of the institutions and universities taking part in the program, in charge of strategic steering and validation of the program’s orientations;

Steering Committee (StC), made up of the program director, the heads of the targeted projects and the project managers, in charge of leading and coordinating the program, and making decisions concerning its operation;

International Scientific Advisory Board (ISAB), made up of leading scientists who provide an outside view of the program’s operations. The Chairman, Professor Wendy Bickmore, Director of the MRC Human Genetics Unit at the University of Edinburgh, will help to select exclusively external, impartial and internationally renowned scientists, as well as one or two representatives of patient associations living with the disease.