I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We are trying IVIG treatments, and if they don’t work, we are being sent to the National Institutes of Health (NIH)… Read More
The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is in need of information or resources to assist you on your… Read More
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
