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June 12, 2015

TOPIC: Patient Stories

Zan’s Journey: Diagnosed with SMS

Posted by Christina Jensen

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

May 28, 2015

TOPIC: Advocacy, Featured News, Patients & Members, Press Releases

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Posted by Jennifer Huron






Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today.  More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public… Read More