
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 
2010/C 204/02

THE EUROPEAN COMMISSION,
Having regard to the Treaty on the Functioning of the European Union,
Having regard to Commission Decision 2009/872/EC of 30 November 2009 establishing a European Union Committee of Experts on Rare Diseases, and in particular Article 3(4) thereof,
Whereas:

(1) According to Article 3(1) of Decision 2009/872/EC, the European Union Committee of Experts on Rare Diseases (hereinafter, ‘the Committee’) shall comprise 51 members and the corresponding alternates.

(2) According to Article 3(4) of Decision 2009/872/EC, among these 51 members, the following members shall be appointed by the Commission: four representatives from patients' organisations, four representatives of the pharmaceutical industry, nine representatives of ongoing and/or past Community projects in the field of rare diseases financed by programmes of Community action in the filed of health including three members of the pilot European Reference Networks on rare diseases, and six representatives of ongoing and/or past rare diseases projects financed by the Community Framework Programmes for Research and Technological Development. The 27 representatives of the Member States shall be appointed by the Member States. The representative of the European Centre for Disease Prevention and Control (ECDC) shall be appointed by the ECDC.

(3) In accordance with Article 3(4) of Decision 2009/872/EC and with a view to selecting these members the Commission published four calls for expression of interest which specified the required qualifications and conditions to become member of the Committee. These calls led to lists of suitable candidates from which, based on the assessment criteria listed in the calls, the Commission hereby appoints the said members,
HAS DECIDED AS FOLLOWS:

Sole Article 
The experts listed in the Annex to this Decision are appointed as members of the EU Committee on Rare Diseases.
Done at Brussels, 27 July 2010.
For the Commission
John DALLI
Member of the Commission
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’ organisationsLast 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’ organisationsLast 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 industryLast 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 industryLast 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 diseasesLast 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 healthLast 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 DevelopmentLast 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 DevelopmentLast 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
