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November 22, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

Rare Caregivers Corner: Debra’s Story

Posted at November 11, 2019 09:10 am by Laura Mullen

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 with one of my Peace Corps friends. We hadn’t seen each other since we left Romania in June 2001! I think Mom enjoyed having someone else besides me around for… Read More

November 15, 2019

TOPIC: Patients & Members, Patient Stories

Rare Caregivers Corner: Q&A with Stephanie

Posted at November 11, 2019 09:00 am by Laura Mullen

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 few quick questions about how she spent time away from caring for her daughter.

How did you use your respite?

Stephanie: I took a week away to have some mommy time.

What… Read More

November 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

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

October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

Voices of Rare Cancer: Lisa’s Story

Posted at October 10, 2019 03:58 pm by Valaree DonFrancesco

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 of stage IV intrahepatic cholangiocarcinoma at the age of 46, we were shocked. We believed we were investigating a possible gallbladder issue. Instead, we received a call… Read More