Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection. When Gabby was born …
“When you are faced with a difficult health challenge, you need to be able to turn to a trusted source for support and advice – much like many people battling …
Washington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new …
32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017 Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers …
This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …
Written By: Kate Bartlett “I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving …
Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week …