TOPIC: Press Releases
Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely diagnostics, services, treatments, and cures. The ability of our community to access the appropriate medical procedures and care they need, when they need it, is of the utmost importance… Read More
TOPIC: Patient Stories
This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in 2015, around the time that I turned 30 and was living on my own in Cape Town.
My journey with this disease has been a tough one filled with… Read More
TOPIC: Press Releases
Cleveland, OH, June 29, 2022 – This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD’s annual family focused conference. 300 enthusiastic attendees from across the… Read More
TOPIC: Patient Stories
I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50% of the time. Life has been a challenge because… Read More
TOPIC: NORDPod
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved… Read More
