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June 17, 2015

TOPIC: Advocacy, Featured News, Press Releases, Research

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Posted by Jennifer Huron

 

Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery.   Patients share their experiences in profiles that accompany this study.  Read… Read More

June 12, 2015

TOPIC: Patient Stories

Zan’s Journey: Diagnosed with SMS

Posted by Lisa Sencen

When a psychiatrist diagnosed Robyn Fell’s toddler on the Autism spectrum, she was in shock.   “It’s not that I was in denial,” she explained, “my son, Zan, did have many unusual behaviors.”   A personality that included an insatiable obsession with certain toys, an inability to accept changes in routines and a gift for remembering names and events long after… Read More