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Tag: Rare Disease Research

A total of 26 posts are filed under Rare Disease Research
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Stephen Groft, Champion of Rare Diseases Research, Retires
Through his work with a community that often feels isolated, Stephen C. Groft, Pharm.D., has helped give thousands of rare disease patients… Continue Reading
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Pain in Children Goes Largely Untreated
ORLANDO, Florida — Conditions associated with pain in children are common, yet pharmacologic treatments for pain are prescribed in less… Continue Reading
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Mother Dives into Research on Kearns-Sayre Syndrome for Affected Child
By KRIS WILLIAMS, Hub Regional Correspondent BROKEN BOW — For nearly his entire life, 11-year-old Aniah Preston has been battling a… Continue Reading
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2 Clicks, 1 Vote Equals $100,000 for Sanfilippo Research, Vote Elisabeth Linton
Elisabeth Linton, founder of the Children’s Sanfilippo Research Foundation (Canada), has been nominated for a mother of the year… Continue Reading
These children have the first demonstrated cases of CDG “mosaicism”: their mutations only appear in some cell types throughout the body, not all.
Children With Rare Disease CDG Don’t Have Mutation in Every Cell Type
Children born with rare, inherited conditions known as Congenital Disorders of Glycosylation, or CDG, have mutations in one of the many… Continue Reading
Biopta is a sponsor of the Rare Disease Science Challenge: Be HEARD (Helping Empower and Accelerate Research Discoveries).
Cracking The Code to Rare Diseases with Human Tissue Research
As a contract research organization, our scientists get satisfaction from helping to create new medicines of other companies; we may not… Continue Reading
Two-Hearts-Rock Co-Founder, Kerry Hughes
Backstage with Two Hearts Rock: Making a radical difference for rare disease
A year has passed since our first event “Peace, Love, Rock and HOPE 4 Bridget” featuring Jesse Malin & The St. Marks Social. As Two… Continue Reading

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