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Catching Up With The RARE Daily: Sara’s Army, The Doctors, and Cystic Fibrosis Foundation’s Big News

Need your quick fix of RARE news stories? Check…

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Support Changes Things: Life with Klippel-Feil Syndrome
I was diagnosed with Klippel-Feil-Syndrome and Scoliosis at birth. Immediately the doctors noticed that there was something different about… Continue Reading
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Sara’s Army: My Fight Against Chronic Intestinal Pseudo Obstruction
Submitted by Sara Gebert Chronic Intestinal Pseudo Obstruction. CIPO. The four word, abbreviated four letter diagnosis that was inevitable.… Continue Reading
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Straight Talk Acromegaly Twitter Chat: Advocacy Facebook Content
Novartis will host a live Twitter Chat tomorrow, November 20, from 7:00-8:00 PM ET. Mark your calendars to participate and engage in this… Continue Reading
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Today’s Episode of “The Doctors” Features Kleine-Levin Patient, Alanna Wong
Imagine falling asleep for eight months long and having little to no memory of the time spent ill during those eight months. This is what… Continue Reading
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Sporting Icons Lend Voices to Motor Neuron Disease
by Alex Mitchley Rugby legend Joost van der Westhuizen and the J9 Foundation have found a helping hand in raising awareness of MND and… Continue Reading
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CBS Reports: Twins With Rare Genetic Disorder Could Hold Clue to Cure Ebola
Chris Hempel has spent the last eight years fighting for the lives of her twin girls. Her 10-year-old daughters, Addi and Cassi, both have… Continue Reading
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Running on Stories: Flashing “Share Your Story” Is Not Enough
Growing a community of connected rare storytellers needs support With the Internet already a real presence for more than half of my life,… Continue Reading

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