From Our Affiliates
Catching Up With The RARE Daily: Imbruvica, Chocolate Bar Boys, and the $3.3 M Grant

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Leading IEP Champions | Tanya Johnson
As a mother of a child with a rare disorder, I know first hand how challenging life can be. Endless doctors appointments, constantly feeling… Continue Reading
Synageva Biopharma Makes New Moves with Sebelipase Alfa for LAL Deficiency
Synageva BioPharma Starts Rolling Submission Of A Biologics License Application To The FDA For Sebelipase Alfa First-Ever Product Submission… Continue Reading
The Thriver’s Guide to an Accessible World | Shelley Peterman Schwarz
Life has a way of taking us on unexpected journeys, often to places for which we are unprepared.   My unplanned journey began in… Continue Reading
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NBC Reports: Whole-Gene Scan Analyzes Mystery Illnesses in Kids
A new kind of genetic test that analyzes all of a person’s genes can provide a diagnosis about a quarter of the time for patients whose… Continue Reading
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Celebrate HPP (Hypophosphatasia) Awareness Week with Alexion Pharmaceuticals on October 27-31, 2014!
Everyday with HPP is excited to share the details of their third annual Hypophosphatasia (HPP) Awareness Week campaign. Everyone affected… Continue Reading
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Team Jack Foundation Launches Alex Gordon World Series Campaign
Star leftfielder Alex Gordon of the Kansas City Royals will once again team up with the Team Jack Foundation in the fight against pediatric… Continue Reading
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Living Well, Even While Sick | Joy Selak
Joy Selak was raised in San Antonio, TX and entered Arizona State University in 1966 where she earned four degrees, taught in the English… Continue Reading

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