Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD), discusses NORD’s approach and involvement with Rare Disease Day.
The concept of Rare Disease Day – the last month of February – is the brainchild of Yann Le Cam, head of EURORDIS and NORD has been the United States partner for this annual event.
The main purpose for Rare Disease Day is to make more people aware about rare diseases. While each rare disease is limited in size, there are over 10,000 rare diseases. Cumulatively, they impact a significant segment of society.
Rare Disease Day is also an opportunity for patients, advocates, researchers, and clinicians to share their stories with various groups, including policy makers. As noted by Saltonstall in this video, the entire NORD staff will be working on Rare Disease Day, whether that is on the road and speaking in different states to spread awareness, or, holding different events and fundraisers that directly impact the research that goes into rare diseases. Further, Saltonstall will be in Massachusetts on this day, speaking at the state house as well as a various biotech companies and patient groups to spread awareness about rare diseases.
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