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
Date: 2010-07-27
Institutions: European Commission
Subjects: appointment of staff, committee (EU), health policy, operation of the Institutions








C_2010204EN.01000201.xml










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