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Archives for: June 3rd, 2016

UDN Webinar

Written by Christina Jensen on June 3, 2016

The Undiagnosed Diseases Network (UDN), a research project supported by the National Institutes of Health (NIH) Common Fund, brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this project, patients with longstanding unexplained symptoms can apply to… Read More

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Written by Christina Jensen on May 23, 2016
udn-webinar
The Undiagnosed Diseases Network (UDN) brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this… Read More

Noah Victoria: 2016 Rare Impact Award Honoree

Written by Christina Jensen 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

Join the Running for Rare Team!

Written by Christina Jensen 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

The Undiagnosed: Orphans of the Rare Disease Community

Written by Paul Melmeyer 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