Patient Stories Archives - NORD (National Organization for Rare Disorders)

February 26, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Rare Disease Day

Jason and Nola’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:41 pm by Valaree DonFrancesco

I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on” when I am with Nola. My career had to… Read More

Tags: Rare Disease Day, distal 18q deletion, New York City Police Department, caregiver

February 26, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Valencia Bella’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:31 pm by Valaree DonFrancesco

Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs so tight that it caused extensive nerve damage and near amputation. We have been blessed enough that she… Read More

Tags: Rare Disease Day, Rare Diseases, health equity, amniotic band syndrome

February 24, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Tara O’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 12:54 pm by Valaree DonFrancesco

Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and I also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several conditions before this as well. I have done… Read More

Tags: Rare Disease Day, Rare Disease Day US, Narcolepsy, equity, fibromyalgia, chronic migraine, narcolepsy type 2

February 24, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Rare Disease Day

National Attention for Rare Disease Day Airs on Lifetime Television

Posted at February 2, 2021 11:25 am by Valaree DonFrancesco

This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment featured NORD’s Director of Strategic Planning, Lisa Sarfaty, sharing facts about rare disease and information on how to get involved with Rare Disease Day.

Tags: rare disease community, Rare Disease Day, NORD, National Organization for Rare Disorders, The Balancing Act, Lifetime Television, Behind the Mystery, Lisa Sarfaty, WEGO Health, Brandstar

February 22, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Ramona’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 07:13 pm by Valaree DonFrancesco

I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I also often Read More

Tags: Rare Disease Day, autoimmune neutropenia, Behcet's disease, AA amyloidosis

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February 26, 2021

Jason and Nola’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:41 pm by Valaree DonFrancesco

February 26, 2021

Valencia Bella’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:31 pm by Valaree DonFrancesco

February 24, 2021

Tara O’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 12:54 pm by Valaree DonFrancesco

February 24, 2021

National Attention for Rare Disease Day Airs on Lifetime Television

Posted at February 2, 2021 11:25 am by Valaree DonFrancesco

February 22, 2021

Ramona’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 07:13 pm by Valaree DonFrancesco

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Alone we are rare. Together we are strong.®