Rare Disease News

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

Published November 14, 2019 by NORD

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At NORD, we know that patient-powered initiatives change the world.

Rare Caregivers Corner: Cathy’s Respite Story

Published November 8, 2019 by NORD

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My husband and I got away for a whole week! We went to a resort where we could relax by the pool and catch up on much needed sleep. To …

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November is National Family Caregivers Month

Published November 4, 2019 by NORD

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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 …

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

Published November 1, 2019 by NORD

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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 …

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Voices of Rare Cancer: Lisa’s Story

Published October 1, 2019 by NORD

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Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis …

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Voices of Rare Cancer: Brian’s Story

Published October 1, 2019 by NORD

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WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My …

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Voices of Rare Cancer: Susan’s Story

Published October 1, 2019 by NORD

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Hi! I’m Susan from Philadephia. My journey began in 1991 when I visited a local dermatologist for a strange rash that didn’t go away. That day changed my life. A …

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