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August 15, 2018

TOPIC: Featured News, Patient Stories, Press Releases

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Posted at August 8, 2018 02:35 pm by Laura Mullen

Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the second largest health information site with 90 million monthly visitors, have announced the recipients of the 2018 Healthline and NORD Stronger Scholarships. The program’s goal… Read More

August 1, 2018

TOPIC: Advocacy, Get Involved, Patient Stories

NORD Invites Video Submissions on Advocacy Experience

Posted at August 8, 2018 10:05 am 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 at July 7, 2018 08:00 am 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 9, 2018

TOPIC: Featured News, Patient Stories, Patients & Members, Uncategorized

Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

Posted at July 7, 2018 09:55 am by Laura Mullen

The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the day Joshua Frase was born with a disease so rare that he was said to be only one of fifty five known cases around the… Read More

June 27, 2018

TOPIC: Featured News, Patient Stories, Research

Spencer and Levy-Yeboa Syndrome, the Story of Our Son

Posted at June 6, 2018 09:56 am by Christina Jensen

NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The guest blog post below was written by two parents of a child, Spencer, who passed away from Levy-Yeboa Syndrome, Stacy and Bobby Maxwell. After their… Read More