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
EU Decision 2010/728 · Adopted 27 July 2010 · Extends to United Kingdom
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
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 Diseasesf1, 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 healthf2 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 Developmentf3. 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:
Annotations to the whole text
Footnotes
Contents
- Sole ArticleArticle Sole Article
- Signature
- Annex: List of experts appointed by the Commission as members of the EU Committee on Rare Diseases
- 1Patients’ organisations
- 2Pharmaceutical industry
- 3Projects in the field of rare diseases financed by programmes of Community action in the field of health
- 4Projects in the field of rare diseases financed by the Community Framework Programmes for Research and Technological Development
Sole Article
The experts listed in the Annex to this Decision are appointed as members of the EU Committee on Rare Diseases.
Signature
Done at Brussels, 27 July 2010.
For the Commission
John Dalli
Member of the Commission
1Patients’ 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 |
2Pharmaceutical 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 |
3Projects 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 |
4Projects 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 |