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November 4, 2019

TOPIC: Featured News, Patients & Members

November is National Family Caregivers Month

Posted 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

November 1, 2019

TOPIC: Featured News

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

Posted 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

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 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

October 29, 2019

TOPIC: Advocacy, Events, Featured News

NORD’s Rare Action Network Mobilized for a Successful Hill Day

Posted by Laura Mullen

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a… Read More