Patient Story

Rare Disease Inspires Man to Run for Lieutenant Governor
By Patrick Wilson Richmond –  SOURCE Gene Rossi lay in a bed at Johns Hopkins Hospital in Baltimore, dangerously ill, and watched the… Continue Reading
Prince Harry Visits Siblings with CNL2 Batten Disease in London Hospital
Prince Harry has shown remarkable compassion. Prince Harry has shown extraordinary sweetness by visiting two children in hospital. It’s… 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
With The Majority of Her Family Diagnosed, One Girl Won’t Give Up On Her Fight with Ataxia
By Judy Njuki My father had spinocerebellar ataxia. He passed it on to my two sisters who started having symptoms in their twenties. One… Continue Reading

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Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

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RARE Patient Advocacy Summit

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Sep 15

RARE Champion of Hope Awards

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Corporate Alliance

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Sep 16

RARE Day of Beauty

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Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm