In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help create two new medicines for this devastating rare disease. Then in 2007, his daughter, who was four years old at… Read More
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 Performance Los Angeles Marathon, it was announced today by… Read More
Running for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The race will take place on Sunday,… Read More
The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running… Read More
NORD was glad to have the opportunity to submit comments to the National Institutes of Health (NIH) for its Strategic Plan, where we talked about the importance of programs for rare diseases, especially those for undiagnosed patients that… Read More
