On February 29, 2012, the National Institutes of Health (NIH) celebrated the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance.
David Lamb, cutaneous lymphoma patient and Cutaneous Lymphoma Foundation board member, and Susan Thornton, cutaneous lymphoma patient and the Foundation’s Management Consultant for Programs and Services, attended this important event to increase awareness of cutaneous lymphoma, how the disease impacts patients, and advocate for increased rare disease research efforts.
“Attending this event was truly inspiring. As a patient with a rare disease, I was in awe of all that is being done to make progress on behalf of patients,” commented Mr. Lamb.
A few highlights from the meeting:
• There are approximately 7,000 rare diseases worldwide – but there are treatments for only 250 of them.
• The number of rare diseases is increasing because medical advances have enabled physicians and scientists to properly identify and classify them.
• Eleven percent of NIH’s budget -- $3.5 billion – is devoted to rare diseases. NIH’s Office of Rare Disease Research oversees 9,400 projects.
• Rare Disease Day was observed in 60 countries.
• One rare disease highlighted has only seven known patients, which should help make cutaneous lymphoma patients feel a bit less lonely.
The Foundation looks forward to continued collaborations with the NIH and other organizations advocating on behalf of patients with rare diseases. Together, we will make sure that each person with cutaneous lymphoma gets the best care possible.
Interested in learning more about how you can become involved with the Foundation’s advocacy efforts? Please visit the Advocacy section of our website.
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