Rare Disease News

NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

Published December 3, 2019 by NORD

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By Debbie Drell, Director of Membership My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she …

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Rare Caregivers Corner: Debra’s Story

Published November 22, 2019 by NORD

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One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award. “I was able to meet and have dinner …

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Rare Caregivers Corner: Q&A with Stephanie

Published November 15, 2019 by NORD

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NORD’s Rare Caregiver Respite Program provides eligible caregivers the opportunity to take a much-deserved break while knowing their loved one is being well cared for. Caregiver Stephanie recently answered a …

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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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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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