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Programme committee of the European Conference on Rare Diseases 2010 in Krakow

This page contains the list of the 13 programme committee members and their affiliation. The programme committee consists in 6 patient representatives and 7 health care professionals. It is co-chaired by Torben Gronnebaek, from Rare Disorders Denmark, and Prof Josep Torrent I Farnell, Fundacio Dr Robert and COMP member.

Programme committee
Members	Short introduction
Jakub Adamski Poland	Jakub Adamski works at the Drug Policy and Pharmacy Department of the Ministry of Health in Warsaw.
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.
Dorica Dan Romania	Dorica Dan initiated the Romanian Prader Willi Association in 2003 and established RONARD (Romanian National Alliance for Rare Diseases) in 2007. She has taken part in the opening of the first Centre for Information about Rare Genetic Diseases in Romania and initiated the National Plan for Rare Diseases in Romania. She is a board member of EURORDIS and IPWSO - International Prader Willi Syndrome Organisation since 2007
John Dart United Kingdom	John Dart is currently Chief Operating Officer of DEBRA International. He is a member of the Eurordis Rare Together Steering Committee. John Dart was joint founder of DEBRA Europe and has served as both Chairman and Director.
Dr Bozenna Dembowska-Baginska Poland	Pediatrician specialized in pediatric oncology, hematology and clinical oncology. Adjunct, MD, PhD, Vice-Head, Department of Pediatric Oncology of The Children’s Memorial Health Institute, Warsaw, Poland. Member of Committee on Orphan Medicinal Products (COMP - EMEA) since 2006.
Lia van Ginneken The Netherlands	Member of the Management Team (Secretary) and one of the founding members of the European Myeloma Platform (EMP), a European Umbrella Organisation of Myeloma Patient Groups and Myeloma Patients, founded in 2006.- Chairperson, a.i., of the European Waldenströms M.Network (EWMN), founded in 2009.- Board member of the MM&WM Patient Association (CKP), the Netherlands - Partner of WM patient.- Consultant/trainer in Public Health nursing.
Rainald von Gizycki Germany	MA University of Chicago, PhD 1974 at Heidelberg University 1974-1992: Senior Researcher and Project leader, Battelle Institut, Frankfurt/M.1992-2003: Senior Researcher and Project leader, Empirica GmbH, Bonn/Koeln2003-today: Co- Project leader, sector Rare Diseases, Charite Eye clinic, BerlinVolunteer Experience: Founder, President and now honorary President of Pro Retina Germany Coordinator Retina Europe, Collaboration if several international patient organisations Awards: Order of Merit of the Federal Republic of Germany, author of several books and articles about rehabilitation and health research
Prof Tomasz Grodzicki Poland	Dean of Medical Faculty Jagiellonian University, Cracow. Trained in: Hypertension Divison, A. Ochsner Foundation New Orleans, USA, Dept. Of. Geriatrics, Hammersmith Hosp., London and Dept.of Hypertension, Leuven, Belgium. Previous Head of department, Department of Gerontology. Currently Head of department, Department of the Internal Medicine and Gerontology.
Torben Gronnebaek Denmark	Torben Grønnebæk was born in 1953. He is a patient with Wilson’s disease, and in 1990, he founded the Danish Wilson Association. He was the President of Rare Disorders Denmark, the Danish rare disease alliance, from 1994 to 2009. He co-chaired the first European Conference on Rare Diseases in Copenhagen 2001 and was a EURORDIS representative at the COMP Working Group of Interested Parties from 2001 to 2008. He was elected to the Eurordis Board of Directors in 2003.
Dr Frits Lekkerkerker The Netherlands	Medical Doctor (1962), specialised in Internal Medicine (1969), (endocrinology and clinical pharmacology), Doctoral thesis 1972, Member of Dutch consensus committee on treatment of osteoporosis, Core-Member of the CHMP WP on Biosimilar Medicinal Products, Deputy member of the CHMP Efficacy Working Party, Co-chairman and later member of the CPMP/EMEA working group with patient organizations. CHMP Rapporteur/Co-Rapporteur for numerous blood products, vaccines and monoclonal antibodies (centralised procedure) and orphan drugs.
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 Kerstin Westermark Sweden	MD, PhD, Assoc. Professor, Uppsala University, Uppsala, Sweden. Specialist in Internal Medicine and Endocrinology. 2000 - Member of the Committee for Orphan Medicinal Products (COMP), EMEA 2005 - Senior expert, Medical Products Agency, Sweden 2006 - Chairperson of the COMP 2008 - Adjunct Professor of Medicine, Uppsala University
Pawel Wojtowicz Poland	Pawel Wojtowicz, President of Polish Cystic Fibrosis Foundation MATIO ( MATIO Fundacja Pomocy Rodzinom i Chorym na Mukowiscydoze ), Poland

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