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RARE DISEASES CONFERENCE 2011

WHAT

A media event dedicated to "European Actions to improve the life of patients living with rare diseases".

Video on European initiatives for rare diseases featuring former Commissioner for Health and Consumers Mr J.Dalli

WHO

The Consumers, Health and Food Executive Agency (Chafea) is organizing this media initiative to provide an insight on what is done at European level in the domain of rare disease and the impact of the EU action on the daily life of concerned patients and families.

WHY

Because some 6.000 rare diseases affect around 30 million persons in the EU and the vast majority of them are life-threatening, chronic and debilitating, requiring long term specialist and costly formal and informal care.

Because of their low prevalence and the small number of patients for each disease, medical expertise is fragmented or may simply be located in another European country and as a consequence patients have to wait years to get proper diagnosis and treatment.

In this area of public health initiatives taken at EU level are particularly important, in order to support member states in:

  • Helping patients and professionals share expertise and information across borders;
  • Enhancing access to quality care and diagnostic services;
  • Fostering research on new treatments and facilitating the access of patients to orphan drugs

FOR WHOM

This whole event has been conceived principally for written press and will be hosting journalists from the major European dailies.

The Luxembourg meeting creates the opportunity to meet and interview all the key actors and stakeholders in this important policy area: decision makers from the Member States and from the EU Commission; coordinators of projects and more generally, key experts; representatives from Industry and the Research community and most importantly, patients whose lives have been impacted by what is being done in Europe.

This focus on patients will also be demonstrated through the first showing of a video on rare diseases, produced specifically for the conference and structured around three patient stories. The video is accessible here.

You can access the press pack here.

The presentation and speeches made during the conference will be uploaded and available from 16:00 Wednesday 26 October.

 

WHERE AND WHEN

Luxembourg, 25 – 26 October 2011 (last update : 25-10-2011)

Jean Monnet building, Rue Alcide de Gasperi, L-2920, Luxembourg, Meeting room JMO M1

CONTACT PERSON

Chafea Communication Officer,

Maria Laura Bongoma
Office: DRB-A3/046.
Telephone: direct line (352) 43 01-36608.
Fax: (352) 43 01-30359
Internet: http://ec.europa.eu/eahc
E-mail: Maria-Laura.Bongoma@ec.europa.eu