COMMISSION DECISION
of 27 July 2010
on the appointment of the members of the European Union Committee of Experts on Rare Diseases set up by Decision 2009/872/EC
Sole Article
ANNEX
List of experts appointed by the Commission as members of the EU Committee on Rare Diseases
1.
Patients’ organisations
1.1.
List in alphabetical order of representatives from patients’ organisations
Last name |
First name |
Institute or organisation of affiliation |
Dan |
Dorica |
European Organisation for Rare Diseases |
Grønnebæk |
Torben |
European Organisation for Rare Diseases |
Le Cam |
Yann |
European Organisation for Rare Diseases |
Nourissier |
Christel |
European Organisation for Rare Diseases |
1.2.
List in alphabetical order of alternates from patients’ organisations
Last name |
First name |
Institute or organisation of affiliation |
Geissler |
Jan |
European Organisation for Rare Diseases |
Kent |
Alastair |
European Organisation for Rare Diseases |
Pizzera-Piantanida |
Bianca |
European Organisation for Rare Diseases |
Pogany |
Gabor |
European Organisation for Rare Diseases |
2.
Pharmaceutical industry
2.1.
List in alphabetical order of representatives from the pharmaceutical industry
Last name |
First name |
Institute or organisation of affiliation |
Hughes-Wilson |
Wills |
Genzyme |
Loth |
Kevin William |
Celgene |
Parker |
Samantha |
Orphan Europe |
Valenta |
Barbara |
Baxter |
2.2.
List in alphabetical order of alternates from the pharmaceutical industry
Last name |
First name |
Institute or organisation of affiliation |
Fehervary |
Andras C. |
Novartis |
Finck |
Katia |
Shire Human Genetic Therapies |
Tellier |
Zéra |
LFB Biomédicaments |
Zimmermann |
Martine |
Alexion Europe |
3.
Projects in the field of rare diseases financed by programmes of Community action in the field of health
3.1.
List in alphabetical order of representatives from ongoing and/or past projects in the field of rare diseases financed by programmes of Community action in the field of health including three members of the pilot European Reference Networks on rare diseases
Last name |
First name |
Institute or organisation of affiliation |
Aymé |
Ségolène |
Orphanet Inserm |
Donadieu |
Jean |
Hopital Trousseau |
Donnai |
Dian |
European Network of Centres of Expertise in Dysmorphology |
Fregonese |
Laura |
CHUV Lausanne |
Garne |
Ester |
Hospital Lillebaelt-Kolding |
Taruscio |
Domenica |
National Center for Rare Diseases at the Istituto Superiore di Sanità |
Vives Corrons |
Joan Luis |
European Network for Rare Congenital Anaemias |
Wagner |
Thomas |
European Centres of Reference Network for Cystic Fibrosis |
Webb |
Susan |
Hospital de Sant Pau de Barcelona |
3.2.
List in alphabetical order of alternates from ongoing and/or past projects in the field of rare diseases financed by programmes of Community action in the field of health
Last name |
First name |
Institute or organisation of affiliation |
Dubertret |
Louis |
Fondation Rene Touraine |
Eleftheriou |
Androulla Anastasiou |
Thalassemia International Federation |
Gatta |
Gemma |
Fondazione IRCCS, Instituto Nazionale dei Tumori |
Kaminska |
Magdalena |
European Paediatric Hodgkin Network |
Nelen |
Vera |
Provinciaal Instituut voor Hygiene |
Nguyen |
Gérard |
Rett Syndrome Europe |
Vittozzi |
Luciano |
Centro Nazionale Malattie Rare |
Weill |
Alain |
European Haemophilia Consortium |
Zeidler |
Cornelia |
Medizinische Hochschule Hannover |
4.
Projects in the field of rare diseases financed by the Community Framework Programmes for Research and Technological Development
4.1.
List in alphabetical order of representatives from ongoing and/or past projects in the field of rare diseases financed by the Community Framework Programmes for Research and Technological Development
Last name |
First name |
Institute or organisation of affiliation |
Blay |
Jean-Yves |
European Organisation for Research and Treatment of Cancer |
Bushby |
Kate |
Institute of Human Genetics, University of Newcastle |
De Baets |
Marc |
School for Mental Health and Neuroscience, Maastricht University |
Hiort |
Olaf |
Universitätsklinikum Schleswig-Holstein |
Koutouzov |
Sophie |
GIS-Institut des Maladies Rares |
Wagemaker |
Gerard |
Department of Haematology, Erasmus University Medical Center Rotterdam |
4.2.
List in alphabetical order of alternates from ongoing and/or past projects in the field of rare diseases financed by the Community Framework Programmes for Research and Technological Development
Last name |
First name |
Institute or organisation of affiliation |
Matthijs |
Gert |
Centre for Human Genetics, University of Leuven |
Palau |
Francesc |
Centro de Investigación Biomédica en Red de Enfermedades Raras |
Picci |
Piero |
Istituto Ortopedico Rizzoli di Bologna |
Rieß |
Olaf |
Institute of Medical Genetics, University of Tübingen |
Tanner |
Stuart |
Emeritus professor at University of Sheffield |
Zambruno |
Giovanna |
Istituto Dermopatico dell'Immacolata, Roma |