Written by Jennifer Huron on May 6, 2016

NORD, a nonprofit dedicated to helping people with rare diseases, reached a new milestone with 1 million visits to its website (www.rarediseases.org) in the past month.
“As part… Read More
Written by Christina Jensen on December 28, 2015
The Cure HHT Foundation, is a non-profit organization dedicated to increasing public and professional awareness and understanding of hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber Rendu syndrome. This is an inherited vascular (blood vessel) disorder characterized by direct connections between arteries and veins with no intervening capillaries, or… Read More
Written by Christina Jensen on December 15, 2015
The CCHS Family Network (CCHSFN) is a voluntary, non-profit, self-help organization dedicated to providing support and information to families with children affected by congenital central hypoventilation syndrome. Congenital central hypoventilation syndrome is a rare neurological disorder of infancy and childhood characterized by a decrease in respiratory function during sleep. Established… Read More
Written by Christina Jensen on December 1, 2015
The Joshua Frase Foundation (JFF) is a non-profit organization whose mission is to support ongoing medical research in hopes of finding a cure for myotubular myopathy. JFF also provides monetary and emotional support to families who are affected by congenital myopathies. Myotubular myopathy is a rare muscle-wasting disorder that occurs…
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