Scroll
To Top

August 6, 2018

TOPIC: Featured News, Patients & Members

NORD Issues Statement on the Passing of Dr. Robert M. Campbell

Posted by Christina Jensen

Washington, D.C., August 6, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the recent passing of Dr. Robert M. Campbell.

“NORD is deeply saddened to learn of the passing of Dr. Robert M. Campbell. A great friend to NORD, Dr. Campbell… Read More

August 1, 2018

TOPIC: Advocacy, Get Involved, Patient Stories

NORD Invites Video Submissions on Advocacy Experience

Posted by Christina Jensen

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization’s 35 years of voicing the needs of… Read More

July 26, 2018

TOPIC: Patient Stories, Research

Giving Spotlight:  Honoring Mom-Mom’s Legacy with Research and Awareness

Posted by Jennifer Huron

 Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of the Yankanich family who has been raising money for Pheochromocytoma research with NORD. After losing… Read More

July 19, 2018

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

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Posted by Christina Jensen

Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.  It is available for viewing here Read More

July 17, 2018

TOPIC: Advocacy

NORD Responds to the Administration’s “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”

Posted by Christina Jensen
Washington, D.C., July 17, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement after responding to the Administration’s “HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”:
“Yesterday, NORD officially responded to the Trump Administration’s call for commentson their ‘Blueprint… Read More