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July 11, 2018

TOPIC: Advocacy, Events, Featured News, Industry, Patients & Members, Research

FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

Posted by Christina Jensen

1200px-Scott_Gottlieb_official_portraitDr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 marks his second year at the Summit, and we look forward to Dr. Gottlieb’s update for the rare disease community.

In addition… 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 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

July 2, 2018

TOPIC: Featured News

Get to know Jill Pollander, NORD’s new Director of Patient Services

Posted by Laura Mullen

Earlier this month, Jill Pollander joined NORD as Director of Patient Services. Jill has a B.S. in Nursing from Northeastern University and a M.S. in Nursing from University of Phoenix. She brings a great breadth of experience in healthcare to NORD, including working as an emergency room nurse and in long-term care, establishing a Licensed… Read More

June 27, 2018

TOPIC: Advocacy

NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies

Posted by Christina Jensen
Washington, D.C., June 27, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding this week’s actions by the Centers for Medicare and Medicaid Services (CMS) to protect patient access to medication within Medicaid formularies:
“NORD lauds the Centers for Medicare and… Read More

June 27, 2018

TOPIC: Featured News, Patient Stories, Research

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

Posted 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