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November 14, 2019

TOPIC: Featured News, Patients & Members, Sticky Posts for Homepage

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted at November 11, 2019 06:12 am by Laura Mullen

At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. 

In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease… Read More

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November 12, 2019

TOPIC: Events, Featured News

Reflections of a First Time NORD Summit Attendee: Matthew’s Story

Posted at November 11, 2019 02:02 pm by Laura Mullen

I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy meeting (it was) with limited discussions on technical and… Read More

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November 4, 2019

TOPIC: Featured News, Patients & Members

November is National Family Caregivers Month

Posted at November 11, 2019 09:11 am by Laura Mullen

Did you know that November is National Family Caregivers Month? It’s a time to recognize family caregivers for their selfless devotion and dedication to supporting loved ones. NORD’s Rare Caregiver Respite Program is a first-of-its-kind assistance program that provides that well-deserved recognition, giving caregivers of rare disease patients the opportunity for a much-needed respite. NORD designed this… Read More

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November 1, 2019

TOPIC: Featured News

NORD supports Dr. Stephen Hahn’s nomination for FDA commissioner

Posted at November 11, 2019 02:42 pm by Valaree DonFrancesco

On Friday, November 1, 2019, the White House announced the nomination of Dr. Stephen Hahn, MD, as the next US Food and Drug Administration (FDA) commissioner. In response, the National Organization for Rare Disorders (NORD) offers support to the appointment of Dr. Hahn as the next FDA commissioner.

Dr. Hahn will bring to FDA strong research and management credentials as… Read More

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November 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

New NORD Member PALS Shares About the Impact of Free Flights for the Rare Disease Community

Posted at November 11, 2019 09:51 am by Laura Mullen

Patient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog and weakness. Both were officially diagnosed in 2017, with hypophosphatasia, a metabolic bone disease. Melanie has broken multiple bones without cause or direct trauma. Jacob lost a permanent molar… Read More

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Alone we are rare. Together we are strong.®