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 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:
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