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August 24, 2015

TOPIC: Patient Stories, Press Releases, Medical, Sticky Posts for Clinicians and Researchers

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Posted at August 8, 2015 12:48 pm by Jennifer Huron

A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.

“Living with a rare condition like nOH affects every part of your daily life,” says Mary Dunkle, Vice President of… Read More

June 17, 2015

TOPIC: Press Releases, Featured News, Research, Advocacy

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Posted at June 6, 2015 12:38 pm by Jennifer Huron

 

Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery.   Patients share their experiences in profiles that accompany this study.  Read… Read More

May 28, 2015

TOPIC: Members, Advocacy, Press Releases, Featured News

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Posted at May 5, 2015 10:52 am by Jennifer Huron

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Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today.  More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public… Read More

May 21, 2015

TOPIC: Press Releases, Featured News, Advocacy

NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Posted at May 5, 2015 04:38 pm by Jennifer Huron

NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and the introduction of the OPEN Act in the United States Senate.

NORD congratulates the House Energy and Commerce Committee for unanimously approving the 21st Century Cures initiative. As Chairman… Read More

December 18, 2014

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

The Will to Live and the Strength for a Cure

Posted at December 12, 2014 05:54 am 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