For the tenth consecutive year, patients and advocates will run as members of the Running for Rare Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services. Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH).
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Later Event: March 23First Annual Industry-Academia Convocation on Rare Disease