News from NORD

Running Marathons to Advance Rare Disease Awareness and Diagnosis


 

Running for Rare, NORD’s signature charity marathon team, participated as an official charity partner in the Tata Consultancy Services (TCS) New York City Marathon in November. The team participates in several marathons and half-marathons each year to raise funds for NORD’s program for undiagnosed patients. Specifically, the NORD program provides financial assistance for medical testing required of applicants to the Undiagnosed Diseases Network (UDN).

Each runner on the team is paired with a rare disease patient partner. Runners and their partners provide inspiration to each other and promote awareness of specific rare diseases. They also raise funds for the NORD Patient Assistance Program, to which undiagnosed patients are referred by staff at clinical centers affiliated with the UDN.

The team has planned an ambitious season for 2017 beginning with the Los Angeles Marathon on March 19. Runners interested in joining the team can learn more on the NORD website .

Recommended Reading

Study tracks distant metastatic patterns of Merkel cell carcinoma
MDedge Hematology and Oncology
Study identifies important predictors for PC/PGL
MDedge Hematology and Oncology
Hemophilia drugs top Medicaid spending per prescription
MDedge Hematology and Oncology
Children under 6 with factor XIII deficiency had no major bleeds with recombinant product
MDedge Hematology and Oncology
Sickle cell trait raises exertional rhabdomyolysis risk
MDedge Hematology and Oncology
NORD Urges Congress to Pass 21st Century Cures Act
MDedge Hematology and Oncology
Nominate a Colleague for a NORD 2017 Rare Impact Award
MDedge Hematology and Oncology
Myeloablative HSCT bests IV CYC for systemic scleroderma
MDedge Hematology and Oncology
Patients Are Being Recruited for LPL-Deficiency Study
MDedge Hematology and Oncology
Speaking of NEC Podcast Series Now Has Companion Brochure
MDedge Hematology and Oncology