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