Patients & Members Archives - NORD (National Organization for Rare Disorders)

August 6, 2018

TOPIC: Featured News, Patients & Members

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

Posted at August 8, 2018 03:39 pm 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

Tags: 35th Anniversary Celebration, Children's Hospital of Philadelphia, Dr. Robert M. Campbell, Medical Advisory Committee, Rare Impact Awards, titanium rib

July 19, 2018

TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research, Sticky Posts for Homepage

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

Posted at July 7, 2018 10:17 am 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

Tags: Gene therapy, NORD, Rare disease research, rareedu

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 at July 7, 2018 09:21 am by Christina Jensen

1200px-Scott_Gottlieb_official_portrait Dr. 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

Tags: Dr. Scott Gottlieb, FDA, FDA Commissioner, Gene therapy, Keynote Speaker, NORD Rare Summit, NORD Summit, Patient Perspectives, Patient-Focused Drug Development, Rare Diseases and Orphan Products Breakthrough Summit, U.S. Food and Drug Administration

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

Tags: Alison Rocket Frase, documentary, Joshua Frase Foundation, MTM, myotubular myopathy, Nibs, Paul Frase

May 21, 2018

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

Save the Date for NORD’s 2018 Rare Summit

Posted at May 5, 2018 03:36 pm by Christina Jensen

We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! Please mark the details below in your calendars and keep an eye out for a registration announcement in early June.

Rare Diseases &… Read More

Tags: 2018 Rare Summit, NORD Rare Summit, Rare Diseases & Orphan Products Breakthrough Summit

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