Rare Disease Day is Saturday
Newstimes
Posted: 02/25/2009 07:38:59 PM EST


I am writing to alert your readers to a special day that's coming up soon. On Saturday, Feb. 28, millions of people around the world will be observing the second annual Rare Disease Day.
There will be activities across the United States, throughout Europe, in Canada, in Australia, in China and elsewhere to focus attention on rare diseases as a public health issue.

In the United States, 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.

Many rare diseases are serious and/or chronic. Many are life threatening. Even so, people with rare diseases often have trouble accessing the medical or other services they need because those making the decisions are not familiar with their diseases.

Nearly 30 million Americans (about 1 in 10) have rare diseases. All of us know someone with a rare disease.

I encourage your readers to visit the Web site of the National Organization for Rare Disorders (NORD) at www.rarediseases.org on or before Feb. 28 to read about Rare Disease Day activities in the United States. Visit the global Rare Disease Day Web site at www.rarediseaseday.org to learn what's being done around the world.

Mary Dunkle

Vice President for Communications


National Organization

for Rare Disorders

DANBURY



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