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December 18, 2014

TOPIC: Advocacy, Events, Featured News, Industry, Medical, Patients & Members, Press Releases, Research

The Will to Live and the Strength for a Cure

Posted by admin

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he was three-months old, a muscle biopsy revealed he had… Read More

December 1, 2014

TOPIC: Featured News, Industry, Patients & Members

NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases

Posted by Mary Dunkle


The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.