brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this…
Written by Lisa Sencen on May 5, 2016
Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment. She composed “The Window,” a metaphor for her journey and countless trips to Children’s Hospital and the National Institutes of Health clinical centers. “My car window has been my companion… Read More
Written by Lisa Sencen on January 18, 2016
For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.
The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community… Read More
Written by Rose Gallagher on October 5, 2015
While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await. Rare disease patients often wait years… Read More