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Archives for: April 29th, 2021

Ray Stevens is Taking Rare Disease Awareness to New Heights

Written by Valaree DonFrancesco on April 7, 2021

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

Running for Rare Marathon Team Expands Under NORD

Written by Jennifer Huron on March 11, 2016

running4rare_NORDThe 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