CELEX: 32010D0728
Language: en
Date: 2010-07-27 00:00:00
Title: 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

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