# C_2010204EN.01000201.xml

| 28.7.2010 | EN | Official Journal of the European Union | C 204/2 |
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28.7.2010

EN

Official Journal of the European Union

C 204/2

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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,

1

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. |
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(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. |
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(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.

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| (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, |
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(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

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(1)  OJ L 315, 2.12.2009, p. 18.

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(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.

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(3)  OJ L 412, 30.12.2006, p. 1.

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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 |

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 |

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 |

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 |

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 |

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 |

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 |

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 |

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

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