More than 6,500 rare diseases affect about 25 million Americans. The NIH’s seventh annual celebration of Rare Disease Day strives to raise awareness about these diseases through a public, free event to be held on Feb. 28.
The rare disease research community will offer various tours, presentations, posters and exhibits highlighting the challenges among people with rare diseases. Heavy emphasis will be placed on research and collaboration activities that have led to progress in diagnostics and treatments.
Topics on the agenda include:
- Medical devices for rare diseases
- Using advanced imaging techniques for insights into rare genetic heart disease
- Establishment of an Undiagnosed Diseases Network
The ‘Rare Disease Day’ event will take place Feb. 28 from 8:30 a.m. to 5:00 p.m. at the NIH Clinical Center (Building 10), Masur Auditorium in Bethesda, MD. The event will also be broadcast online for those who are not able to attend in person.
In conjunction with the NIH Clinical Center, the event is presented by the National Center for Advancing Translational Sciences’ (NCATS) Office of Rare Diseases Research. It will feature several speakers, including Congressman Leonard Lance (NJ-07), co-chair of the Rare Disease Caucus; NIH Director Francis S. Collins, M.D., Ph.D; NCATS Director Christopher P. Audstin, M.D.; and NIH Clinical Center Director John I. Gallin, M.D.
Mesothelioma as a Rare Disease
Approximately 3,000 Americans are diagnosed with mesothelioma, a rare disease caused by asbestos exposure, every year. This rare form of lung cancer occurs most often in the thin membrane lining the lungs, chest and abdomen. The disease attacks the membranes (mesothelium) that surround and protect vital organs. Mesothelioma cancer cells are known to spread quickly and therefore the disease is often fatal.