International Rare Disease Day

"Patients and Researchers: Partners for Life!"

PARIS, February 24, 2010 - For this annual event hundreds of patient groups and their
partners organise activities to raise awareness on rare diseases and the 30
million people affected by them in Europe.

Rare Disease Day was launched and is coordinated by the
European Organisation for Rare Diseases - EURORDIS (www.eurordis.org),
a federation representing more than 400 patient organisations in 42
countries. The campaign involves rare disease national alliances and patient
groups in 40 countries, in the EU as well as in the USA, Canada, Argentina,
Australia, New Zealand, Japan, China and Taiwan, amongst others.

The European Union considers a disease as rare when it affects
less than 1 in 2,000 citizens. 80% have a genetic origin and the majority
affects children. Most rare diseases are serious, chronic and
life-threatening. Due to their low prevalence, medical experts are also rare,
knowledge is scarce, offer for care is inadequate, research is limited and
very few cures exist.

This year's theme focuses on the importance of rare disease
research. Research represents hope for the millions of rare disease patients
without cure today. In the last decade, scientific and medical progress has
opened up new opportunities in the field of rare disease research; rare
diseases have in turn made major contributions to research and treatment
discoveries for more frequent diseases.

Rare Disease Day 2010 highlights the importance of
collaboration between patients and researchers. A survey recently conducted
by EURORDIS amongst 300 patient organisations representing over a million
individual patients in 29 countries - shows that patients are important
catalysers of research.

The results of the survey will be presented at a European
Workshop organised by EURORDIS, on March 1ST, 2010, in Brussels. The event,
co-organised with E-RARE (www.e-rare.eu) in partnership with the
European Commission, Orphanet (www.orpha.net) and EuroPlan
(www.europlanproject.eu), will make the case for rare disease research
to be included in public funding schemes.

In line with this year's theme, patient organisations are
invited to nominate a scientist - who has helped advance research into their
disease, to the Rare Disease Research Hall of Fame (39 nominations to date).
Individual patients can enter the photo and video contests (more than 300 new
entries to date) and share their stories on Facebook (over 6000 fans to date
and more than 50 joining each day).

More information on: www.rarediseaseday.org

Press contact:

Paloma Tejada -Tel : +33-(1)-56-53-52-61 - paloma.tejada@eurordis.org

Press contact: Paloma Tejada -Tel : +33-(1)-56-53-52-61 - paloma.tejada at eurordis.org