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December 2, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Industry, Get Involved

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Posted by Mary Dunkle

Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related careers.

Today’s healthcare professionals are aware that… Read More

December 1, 2015

TOPIC: Featured News

Joshua Frase Foundation

Posted by Lisa Sencen
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 in three forms based on severity, inheritance, and symptoms…. Read More

November 23, 2015

TOPIC: Featured News

National Brain Tumor Society

Posted by Lisa Sencen
The National Brain Tumor Society (NBTS) is a non-profit organization whose mission is to inspire hope and provide leadership within the brain tumor community. They seek to find a cure and improve the quality of life for those affected by brain tumors. NBTS funds strategic research, delivers support services, and promotes collaboration. NBTS was formed in 2008 by… Read More

November 20, 2015

TOPIC: Advocacy, Industry

National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease

Posted by Jennifer Huron

fdaNext week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne Muscular Dystrophy (DMD).  These much-anticipated events provide hope for children and families living with this devastating and fatal… Read More

November 17, 2015

TOPIC: Advocacy

NORD Supports Nomination of Dr. Califf for FDA Commissioner

Posted by Jennifer Huron

The National Organization for Rare Disorders (NORD) today urged the Senate HELP Committee to move quickly to advance the confirmation of Robert Califf, M.D., as the next Commissioner of the Food and Drug Administration (FDA).  Dr. Califf’s Senate confirmation hearing is scheduled to take place today. He was nominated by the President in September.

In a letter to the Senate Committee… Read More