February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.
One more inspirational story about Rare Disease: Mastocytosis.
On the last day of February, millions of people around the
world will be observing World Rare Disease Day.There will be activities across the U.S.,
throughout Europe, in Canada,
in Australia, in China and
elsewhere to focus attention on rare diseases as a public health issue.
In the U.S.,
a disease is considered rare if it affects fewer than 200,000 people.Some rare diseases such as Lou Gehrig’s
disease (ALS) are well known to the public.However, many others are not, and you can imagine the loneliness of
having a disease that most people have never heard of, that has no treatment,
and that is not even being studied by any medical researchers. Keenan Cahill became internet legend, he is a boy with Maroteaux–Lamy syndrome. We want to share one of his inspirational videos, which demonstrates to everybody that people with rare conditions are fantastic!
Fifth International Rare Disease Day has a very beautiful motto:
