About us

Who we are

The Foundation promotes the accurate diagnosis and care of patients affected by a rare disease. To achieve this, the Foundation develops and delivers tailored solutions in training and education in rare diseases.

Governance and structure

The Foundation is administered by a board of directors. A scientific committee is responsible for the overall strategy, gap analysis and development of the scientific programme. This committee appoints local organising committees to develop individual courses. The scientific committees control the content of courses.