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Archives for: September 9th, 2016

Becoming a Marathon Runner

Written by Lisa Sencen on September 9, 2016

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 birth to her only daughter, Lily. My co-worker Gia and I discussed the opportunity to… Read More

Noah Victoria: 2016 Rare Impact Award Honoree

Written by Lisa Sencen on May 5, 2016

Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment.  She composed “The Window,” a metaphor for her journey and countless trips to Children’s Hospital and the National Institutes of Health clinical centers.  “My car window has been my companion… 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