VIDEO from Medialink and Shire plc: Rare Diseases Must Be Top of the Hea...( First European Rare Disease Day hig...),Health

First European Rare Disease Day highlights impact on people affected by

rare diseases

NEW YORK, Feb. 28 /PRNewswire/ -- European Rare Disease Day -- The first ever European Rare Disease Day will be launched on Friday 29 February...because it's a rare day that only comes around once every four years, of course.

(See video from Shire plc at:

http://media.medialink.com/WebNR.aspx?story=34701)

Collectively, rare diseases aren't rare. Rare diseases are defined as those that affect less than 5 in 10,000 people, yet there are approximately 7000 rare diseases, affecting up to 30 million people in the European Union. Current information about these diseases is not always sufficient, making diagnosis difficult. As a result, some patients may have to wait many years to get a confirmed diagnosis - making this a public health priority.

But what can we do about it? The European Organisation for Rare Diseases (EURORDIS) thinks a lot. It's an umbrella group that is building a pan- European network of more than 300 rare disease organisations across 34 different countries, to give a single voice to the large number of people affected by rare diseases.

Up to 30 million people are affected by rare diseases in the European Union. Put another way this could mean:

-- Every time the San Siro stadium in Milan hosts a football match there

could be over 5000 people there with rare diseases

-- There could be over 2500 people with these illnesses at EuroDisney on

an average day

-- In any one day, over 1400 people visiting the Louvre museum in Paris

could have these diseases

-- Over 4 million members of Facebook could have a rare disease

So what is a rare disease?

-- They have a low prevalence (affect less than 5 in 10,000 people), and

are often chronic, progr
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