Subscribe to
this category

People & Organizations

A total of 170 posts are filed under People & Organizations
Rally on Rainier: Father Climbs For His Son and All Children Impacted by Sanfilippo Syndrome
Carl Kapes (father to two sons impacted by Sanfilippo Syndrome or MPS IIIA) has organized a climb called Rally on Rainier for later this… Continue Reading
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
Screen Shot 2016-08-09 at 1.45.22 PM
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
Screen Shot 2016-08-09 at 1.19.39 PM
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
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
Screen Shot 2016-07-27 at 9.14.58 AM
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
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