rare 2011 : European Day

Friday November 4 th, 211

08:00 08:45

Welcome of the participants, welcome coffee and visit of the exhibition

08:45 09:00

Introductions and Welcome Message

• Chairman

Aymé Ségolène | Directrice d’Orphanet

09:00 10:30

SESSION 1: ENSURING VISIBILITY OF RARE DISEASES IN HEALTH INFORMATION SYSTEMS

,
- Rare diseases in international nomenclatures
- Data on rare diseases: which annotations to support R&D?
- Bioinformatics for rare diseases: Promises and challenges
;

• Chairman

Aymé Ségolène | Directrice d’Orphanet

Devereau Andrew | Director of the National Genetics Reference Laboratory

• Speakers

Aymé Ségolène | Directrice d’Orphanet

Robinson Peter | Institute of Medical Genetics of the Charité in Berlin

Sanseau Philippe | Directeur du Département de Computational Biology a GlaxoSmithKline (GSK)

09:00 10:30

Roundtable of stakeholders and discussion

• Speakers

Garcia Alain | IGAS- Plan National Maladies Rares

Macek Milan | President of the European Society of Human Genetics

Pogány Gábor | President of the Rare Diseases Hungary (HUFERDIS)

Whiteman David A. H. | Shire, Directeur médical du programme de Elaprase

10:30 11:00

COFFEE BREAK

11:00 13:00

SESSION 2: PARTNERING TO OPTIMISE THE USE OF PATIENT DATA TO IMPROVE CLINICAL RESEARCH AND HEALTH CARE

:
- State of the art of disease specific registries in Europe: Successes and challenges
- State of the art of national data repositories
- Patient data for the evaluation of the clinical-added value of orphan drugs: Possible mechanisms for collaboration at EU-level
;

• Chairman

Bushby Kate | Professor of Neuromuscular Genetics Newcastle University

Heathfield Adam | European Science Policy Director, Pfizer

• Speakers

Facchin Paola | Associated Professor of Pediatrics

Jansen Herwig | Scientific Institute of Public Health

Meyer François | HAS, Directeur de l’évaluation médicale, économique et de santé publique.

Paul Landais | Coordinateur de la banque nationale de données maladies rares,

Tanner Stuart | is Emeritus Professor of Paediatrics, University of Sheffield

11:00 13:00

Roundtable of stakeholders and discussion

• Speakers

Madison Maria | Director of Outcome Surveys at Shire HGT

Posada De La Paz Manuel | Director of the Institute of Rare Diseases Research.

Taruscio Domenica | Centro Nazionale Malattie Rare - EUCERD

13:00 14:00

LUNCH

14:00 15:00

SESSION 3: : IMPROVING ACCESS TO EXPERTISE AND QUALITY CARE

;
- National centres of expertise for rare diseases: current situation in Europe and recommendations from EUCERD for the implementation of centres of expertise
- Networking between expert centres: Where do we stand
- The testing landscape in Europe: Challenges and solutions
- The Cross-Border Health Care Directive and its implications for rare diseases
:

• Chairman

Kääriäinen Helena | Research Professor at National Institute for Health and Welfare, Finland

Montserrat Antoni | European Commission DG Sanco

• Speakers

Bushby Kate | Professor of Neuromuscular Genetics Newcastle University

Jessop Edmund | Medical Adviser, Advisory Group for National Specialised Services

Matthijs Gert | Head of the Laboratory for Molecular Diagnosis

Montserrat Antoni | European Commission DG Sanco

14:00 16:00

Roundtable of stakeholders and discussion: How to organise health care at European level to meet the expectations of patients ?

• Speakers

Hughes-Wilson Wills | Vice President, Health Policy Europe at Genzyme

Kääriäinen Helena | Research Professor at National Institute for Health and Welfare, Finland

Nourissier Christel | Secrétaire Générale d’EURORDIS

Parker Samantha | Manager of Orphan Academy and External Affairs

16:00 16:15

Closing Remarks

• Speakers

Montserrat Antoni | European Commission DG Sanco

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