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Archives for: March 19th, 2017

Los Angeles Marathon

Written by Christina Jensen on March 19, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Los Angeles Marathon. Click here to apply.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for… Read More

Becoming a Marathon Runner

Written by Christina Jensen 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 Christina Jensen 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