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People & Organizations

A total of 169 posts are filed under People & Organizations
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CBS Sunday Morning: Putting a Face on Rare Diseases
CBS (Source)—When children are dying of rare diseases that few people are working to cure, a closer look is required — which is just… Continue Reading
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Mira’s Mom Bikes for Hemophagocytic Lymphohistiocytosis (HLH) Research
Thanks to WBAY for this story. A mother of a survivor of a rare auto-immune disease is helping other families by biking several hundred… Continue Reading
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Abeona Therapeutics, EB Research Partnership and EB Medical Research Foundation to Collaborate on Epidermolysis Bullosa (EB) Treatments
Abeona Therapeutics Inc. (Nasdaq: ABEO), a clinical-stage biopharmaceutical company focused on delivering gene and plasma-based therapy for… Continue Reading
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2nd Annual Erdheim-Chester Disease Awareness Week
Organization: ECD Global Alliance Submitted by: Elizabeth Anderson September 12-17, 2016 will mark the Erdheim-Chester Disease Global… Continue Reading
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Former Arsenal Starlet Kyle Ebecilio Diagnosed with Guillain Barre Syndrome
Kyle Ebecilio, the former Arsenal youth prospect, has been diagnosed with Guillain Barre Syndrome – a rare disease which causes the… Continue Reading
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Teen with Rare Disease Gets Special Trip to Balloon Fest
The 6th annual Balloon Fest is underway in Waterford and this year there is a VIP guest enjoying the celebration. The program Wishes and… Continue Reading
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1st GAND Family Gathering a Success
Helping Hands for GAND hosted their 1st GAND Family Gathering June 23-25, 2016, in St. Louis, Missouri. This event was made possible… Continue Reading