Segolene Ayme, speaking at World Orphan Drug Congress 2011

Segolene Ayme,
Director of Research
INSERM, EU Commission

Ségolène Aymé is a medical geneticist, Director of research at the French Institute of Health and Medical Research (INSERM). She is the executive manager of the INSERM department dedicated to information on rare diseases in Paris. This service established Orphanet (www.orpha.net) in 1997, the European database of rare diseases and orphan drugs which is currently funded by the French Ministry of Health, the INSERM and the European commission (DG Public Health and DG Research). Since 2004, she has served as the leader of the Rare Diseases Task Force established by the European Commission, DG Public Health and Consumer Protection. She is also the editor-in-chief of the Orphanet Journal of Rare Diseases (www.ojrd.com) and the chair of the WHO Topical Advisory Group for Rare Diseases.

Appearing:

World Orphan Drug Congress Day 1 Tuesday 29th November 2011

10.10am

Creating a patient-orientated environment through the National Rare Disease Plans

Why do public health strategies on rare diseases need to be harmonised in Europe?
The long term priority is to create a uniform and normalised access to healthcare
How are member states ensuring rare disease sufferers have access to high quality care?
How will member states prioritise best practice when tackling rare diseases?

Segolene Ayme,

Director of Research,
INSERM, EU Commission

12.35pm

Panel discussion: A frank evaluation of the value of an orphan drug treatment

Are orphan drugs pricing themselves out of reach and do they warrant a premium price tag?
Can the value be good enough for approval but not for reimbursement?
Should there be a specific value framework for rare disease dugs?
Sustainability - what if healthcare can no longer foot the orphan drug bill?
Would imposing pricing regulations improve market access the short term or reduce investment incentives in the long term?
How can an agreeable balance of revenue and patient access be reached?

Segolene Ayme,

Director of Research,
INSERM, EU Commission

Pierrick Rollet,

VP Global Market Access, Advocacy, Communications,
GSK

Richard West,

Committee Secretary,
Behcet's Society

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