Alone we are Rare. Together we are Strong.

NORD Day on February 28, 2011

Rare Disease Day is February 28

I would like to let readers know that today is a special day - a day used in many countries around the world to focus on rare diseases as a public health issue.

Nearly 30 million Americans (about 1 in 10) have rare diseases. Chances are you know someone with a rare disease. 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. 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.

I have Dercum's Disease -- (#3 on NORD's list) a disease that is often disabling and painful. It was discovered more than 110 years ago, yet it still has no identified cause or cure and almost no research is being done. I a member of an online support group at mdjunction.com where I talk with other Dercum's patients about how to learn to live with our changing bodies along with the lack of doctors who are familiar with Dercum's and the frustration over not knowing what might help us.

Like us, people with rare diseases often have trouble accessing the services they need because those making the decisions are not familiar with their diseases. Spreading information is the key to future help.

I encourage you to visit the U.S. Rare Disease Day Web site at www.rarediseaseday.us and help me spread the word.

Thank you so very kindly from all the members of MDJunction.com - people helping people which is a site for all diseases of any kind and for caregiver support and more. Visit us and see what you think. We are one big painfully happy family - people helping people!

Username: wildexpectation

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keeter says ... on Wednesday, Mar 2 at 1:36 PM

Thanks, wild!

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Elaine says ... on Monday, Feb 28 at 5:50 PM

I also have Dercums Disease plus Myasthenia which is also a rare disease. Myasthenia is known but Dercums needs to raise more awareness and research. Thanks to Rare Disease Day we can be closer to bringing awareness and help to Orphan diseases.

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