From Our Affiliates

Tag: orphan disease

A total of 110 posts are filed under orphan disease
isis_Pharma
Mystery Rare Disease Drug Earns Isis $5M from GSK
Sometimes, it pays to be secretive: Isis Pharmaceuticals received a $5 million milestone payment from GlaxoSmithKline (GSK) toward the… Continue Reading
Rare_Disease_Day_Logo_Leap_Year
Blog Hop for Rare Disease Day – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop.… Continue Reading
Team_SanFilippo_Foundation
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point,… Continue Reading
Kyle and Jackson Watkins, with Lynn Watkins and Lisa Hubbard of Sempra Energy Supporting Global Genes Project
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project,… Continue Reading
Rare_Disease_Genetic_Undiagnosed_Foundations_NIH
Rare Stories of Hope and Inspiration – Submit Yours Today
Thank you to all those who have submitted stories of hope and inspiration!  We’ve received many heartfelt stories from parents and… Continue Reading
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Improving Drugs and Biologics for Children – Washington DC Briefing
The laws named the Best Pharmaceuticals for Children Act and Pediatric Research Equity Act, or BPCA/PREA, have resulted in over 400 drug… Continue Reading
Emil_Kakkis_Rare_Disease_Ultragenyx
Unlocking Lifesaving Treatments Act – ULTRA Act of 2012
In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY), two senior members of the Energy and Commerce Committee,… Continue Reading

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