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Patient Stories

A total of 525 posts are filed under Patient Stories
Family Hopes to Raise Awareness for Daughter with Neurofibromatosis (NF)
May has been designated as National Neurofibromatosis (NF) Awareness Month and bringing awareness to this rare genetic disease is a personal… Continue Reading
As Her Boys Battle Rare Disease, Mom Drives for a Cure
There are five people in the United States that live with Jansen’s Metaphyseal Chondrodysplasia. Neena Nizar and her two sons, Arshaan and… Continue Reading
Hope For 16-Year-Old California Boy Fighting Rare Genetic Disease
 By Justine Waldman, SOURCE It is a story about courage, tenacity, and perseverance. It is about parents who are keeping up the fight to… Continue Reading
Jackson’s Journey with UBE2A
Jackson was my second pregnancy. We didn’t know we were having a boy until he came along two months early! My pregnancy with Jackson was… Continue Reading
Why We Didn’t Accept ‘No’ for an Answer When Finding a Diagnosis for Our Child
by Penny FitzMaurice as seen on The Mighty   “His constellation of symptoms does not match any known disorder or syndrome.” I can’t… Continue Reading
“Trust Your Gut” Warns Patient with Chylomicronemia Syndrome
By Cassandra Bush Hello, I’m Cassandra and I am 23 years old. I began experiencing symptoms in 2015 of what felt like a burning sensation… Continue Reading
Siblings in India with Rare Disease Share Wheelchair
BENGALURU: They may not be conjoined twins but Mandya siblings Jayanth, 24, and Rekha, 22, are bound by a wheelchair. Afflicted with a rare… Continue Reading

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