Lesley Greene has been appointed as a new member of the COMP. As the mother of a patient affected by the rare metabolic diseases cystinosis, she contributes her personal experience with clinical trials and a solid knowledge of the drug development process. As a result of her interest in orphan drugs and active exchanges with US based patient groups, Lesley was instrumental in starting discussions about orphan drug legislation in Europe. She strongly advocated for the adoption of the Orphan Drug Regulation in Europe in 1999, and subsequently served as President of EURORDIS from 2001 to 2003. She is also the founder and currently Vice-President of the UK charity CLIMB (Children living with Metabolic Inherited Diseases), which she created to improve the lives of those affected by metabolic diseases and to raise awareness of their impact.
