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Rare Community

A total of 526 posts are filed under Rare Community
Beautiful Portrait of Child with Bohring-Opitz Syndrome Featured in Beyond the Diagnosis Exhibit
One Sunday morning, Chad and I came across the Sunday Morning Show. They were showing a portrait of a child with a Rare Disease. It was… Continue Reading
Rare Diseases International Policy Event, Geneva
To mark the occasion of Rare Disease Day 2017, Rare Diseases International, the Global Alliance of Rare Disease Patients, in partnership… Continue Reading
Spotlight Shined on The Bohring-Opitz Syndrome Foundation From Special Books by Special Kids
The Bohring-Opitz Syndrome (BOS) Foundation, Inc. is excited to announce the rare disorder has been gaining international attention this… Continue Reading
Michael’s Cause 6th Annual Evening of Hope Dinner Dance
The 6th annual Michael’s Cause Evening of Hope Dinner Dance will be held on April 1, 2017 at the Hilton Garden Inn Staten Island, NY.… Continue Reading
Rare Disease Report: 4-Year-Old Girl Contracts Rare Brain Disease After Tonsil Surgery
By Andrew Black at Rare Disease Report   She went in to have her tonsil’s removed, she came back with a rare brain disease known as acute… Continue Reading
Rare Diseases South Africa Invites You to Their #DenimWalk
2017 marks 10 consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2017 puts the focus on the daily… Continue Reading
The Variability of Marfan Syndrome: Spreading Awareness and Connecting the Patient Community
Siblings will always argue over who is taller. But what happens when your height is one of the symptoms of a life-threatening rare disease?… Continue Reading
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