My name is Jen, and I am so excited to be a part of NORD’s Running for Rare program for the Lake Norman Half Marathon on May 5th. As a pediatric physical therapist and a rare disease patient myself, persons with rare diseases are near and dear to my heart. In just five short years in the field of physical therapy, I have already worked with and cared about patients with over 20 different rare diseases. Because there are so many people with so many rare diseases that I am rooting for in life, it was only natural to become a part of the Running for Rare team! My goal for participating in the Running for Rare program is to raise awareness for rare diseases, raise awareness of NORD's and their work, raise funds to help those not yet diagnosed to undergo appropriate diagnostic testing, and show love and support to the entire rare disease community.
Please continue reading below about how the Running for Rare program helps support NORD’s Undiagnosed Diseases Program and consider making a donation!
For the 12th consecutive year, patients and advocates will run as members of the Running for Rare Diseases 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 Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH). Donations in support of this campaign will be tax-deductible to the extent permitted by law. NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities. The individuals and families helped by NORD often have nowhere else to turn for assistance. Your support of this campaign is very important to them.