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I am writing to alert your readers to a special day that’s coming up. On Feb. 28, millions of people around the world will be observing the third annual 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 — such as chronic intracranial hypertension — are not. I was diagnosed in December after suffering symptoms since 2004. I have found only a handful of people suffering from this condition, as it affects only 1 in 100,000. You can imagine the loneliness of having a disease that most people have never heard of, that has no cure and limited treatment options, and that few medical researchers are even studying.

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 U.S. Rare Disease Day Web site www.rarediseaseday.us to read about Rare Disease Day and to visit the Intracranial Hypertension Research Foundation www.ihrfoundation.org to learn more about chronic IH.

Heather WatleyVilseck, Germany

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