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Rare Diseases Conference 2011

Conference description and available material

The conference will be introduced by a presentation on the rationale for EU action in the area of rare diseases. It will focus on the problems encountered by concerned patients and their families; and how the EU is supporting member states' actions to facilitate access to treatment and care for patients.

The agenda of the event can be found here.

Following a short introduction to the objectives of the meeting, the event will be opened by the Director General of DG Health and Consumers, Ms. Paola Testori-Coggi.

The patient centered focus of the meeting is at the heart of the first day (25/10 pm).

Testimonials will be given by patients and family members, presenting their own stories and how European action has improved their lives.

The first day will be closed by the Minister for Health of Luxembourg, M. Mars Di Bartolomeo.

On the second day (26/10 am) there will be a complete presentation of EU projects on rare diseases and their potential impact. Through these, key experts will provide testimony on the significant burden of rare diseases on public health and possible solutions.

The role of EU-wide pilot networks of expert centres on specific rare diseases will especially be in focus. This also relates to the implementation of the Cross border care directive.

You can find the list of projects and project coordinators here.

A press point is available during the two days for meeting and interviewing all participants.

A short background document on rare diseases can be found here

The speech by Ms Testori-Coggi can be found here.

The video on European initiatives for rare diseases featuring former Commissioner for Health and Consumers Mr J.Dalli will be accessible here.

The CVs of patients and family members present can be found here.

The fact sheets of the projects supported by EU funding can be found here.