full
28.7.2010 EN Official Journal of the European Union C 204/2 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 ( 1 ) , 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 ( 2 ) 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 ( 3 ) . 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 ( 1 ) OJ L 315, 2.12.2009, p. 18 . ( 2 ) OJ L 155, 22.6.1999, p. 1 ; OJ L 271, 9.10.2002, p. 1 ; OJ L 301, 20.11.2007, p. 3 . ( 3 ) OJ L 412, 30.12.2006, p. 1 . 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