European Conference on Rare Diseases - Lisbon November 27 - 28th 2007

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This page contains the list of the 14 programme committee members and their affiliation. The programme committee consists in 7 patient representatives and 7 health care professionals. It is co-chaired by Terkel Andersen, president of Eurordis, and Prof Josep Torrent I Farnell, Fundacio Dr Robert and COMP member.

Programme committee of the European Conference on Rare Diseases 2007 in Lisbon

Programme committee of the European Conference on Rare Diseases 2007 in Lisbon
Members	Short introduction
Terkel Andersen Denmark	Terkel Andersen is a volunteer, on the Board of Directors since 1997. Elected president of Eurordis in May 2003. A person with haemophilia himself, he has been president of the Danish Haemophilia Society since 1985. Terkel Andersen served on the exec. board of the World Fed. of Hemophilia from 1992 to 2002.
Dr Ségolène Aymé France	Medical geneticist, director of research at the French Medical Research Council (INSERM), executive manager of Orphanet. She is the current chairperson of the Public and Professional Policy Committee of the European Society of Human Genetics and the leader of the Rare Diseases Task Force DG Sanco.
Dr Jill Clayton-Smith United Kingdom	Consultant Clinical Geneticist and Honorary Senior Lecturer in Medical Genetics.
Paula Costa Portugal	Paula Costa is a volunteer, mother of a child born with Cornelia de Lange syndrome, and president of Rarissimas.
Michele Lipucci di Paola Italy	Michele Lipucci di Paola is a volunteer, parent of a young adult living with thalassemia. He was a Eurordis Board Member from 1997 to 2006 and vice-president. Michele is a researcher in biological sciences at the University of Pisa.
Prof Milan Macek Czech Republic	Head of Department of Biology and Medical Genetics, Charles University , Prague.
Prof Luis Nunes Portugal	Service of Genetics, Dona Estefania Hospital, and representative of DGS.
Alicja Rostocka Poland	Alicja Rostocka is a volunteer, mother of a child living with cystic fibrosis, and vice-president of the Cystic Fibrosis organisation Poland.
Françoise Salama France	Françoise Salama is a volunteer, mother of 2 children, one of whom is young adult living with Duchenne muscular dystrophy. She is in charge of international affairs, AFM-Telethon. Former member of Eurordis board of directors.
Prof Dr Jörg Schmidtke Germany	Director of the Institute of Human Genetics, Hannover Medical School. Member of the ESHG Public and Professional Policy Committee, and coordinator of ORPHANET.
Tsveta Schyns Austria	Tsveta Schyns is a volunteer, founder of ENRAH (EU Research Network for Alternating Hemiplegia) She is a biologist, but first and foremost she is a concerned mother. ENRAH groups patients, clinicians and geneticists.
Rik Serpentier Belgium	Mr Rik Serpentier is a volunteer, Board Member, Belgian Association for the Parents of Children with Metabolic Disorders.
Prof Josep Torrent i Farnell Spain	Former chairman of the COMP. Gal Director Dr Robert Foundation, Autonomous University organisation devoted to continuing medical education and postgraduate training. Full professor of Pharmacology, Therapeutics and Toxicology.
Dr Sonja van Weely The Netherlands	Co-ordinator of the Dutch Steering Committee for Orphan Drugs.