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-   -   Rare Disease Day; AA and MDS Awareness Week (http://forums.marrowforums.org/showthread.php?t=2732)

Marrowforums Mon Feb 27, 2012 01:15 PM

Rare Disease Day; AA and MDS Awareness Week
 


Wednesday February 29, 2012 marks the fifth annual International Rare Disease Day spearheaded by Rare Diseases Europe (EURORDIS), a patient-driven alliance of rare disease patient organizations.

At least 23 countries are participating in coordinated activities to call attention to rare diseases and the needs of rare disease patients. In the U.S., the National Organization for Rare Disorders (NORD) is also publicizing Rare Disease Day on February 29.

The next day, Thursday March 1, kicks off Aplastic Anemia and MDS Awareness Week from March 1 to March 7, led by the Aplastic Anemia & MDS International Foundation (AA&MDSIF).

Want to help?

Suggestions for your involvement are offered by EURORDIS (click here), NORAD (click here), and the AA&MDSIF (click here). By telling your own story and making your voice heard you can help the community of rare disease patients and show the world we are "Rare but Strong Together" in keeping with this year's theme: solidarity.

Rare diseases

Rare diseases are at a disadvantage for both basic medical research and for development of potential cures by pharmaceutical companies. The organizations that serve patients with rare diseases may not be heard amidst the noise generated by organizations for more common diseases. The Orphan Drug program of the U.S. Food and Drug Administration is one program created to make sure these patients aren't forgotten. There are similar programs in Europe.

Difficulties in diagnosis and recordkeeping have made it hard to know exactly how prevalent aplastic anemia, MDS, and PNH really are, but estimates have been made:
  • Acquired bone marrow failure diseases are diagnosed in more than 15,000 people each year in the U.S.

  • There are 600 to 900 new aplastic anemia diagnoses each year in the U.S.

  • Aplastic anemia is two to three times more common in Asian countries than in the U.S. and Europe, with about 6,000 to 7,000 new diagnoses reported annually worldwide.

  • There are an estimated 12,000 to 20,000 new MDS cases in the U.S. each year.

  • There are estimated to be as many as 21,000 people with PNH and 1,700 new cases each year in North America and Europe.


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