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Archives for: July 15th, 2016

Advocacy Alert: Illinois Rare Disease Commission Bill

Written by Heidi Ross on July 15, 2016

HDR_PolicyAlert_2

UPDATE:  July 11, 2016

Illinois HB 4576 is close to passing!  This bill would establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The… Read More

Rare Disease Artists’ Work Traveling Globe to Raise Awareness

Written by Jennifer Huron on September 8, 2015

cystinosisThe Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, dance, and photography from 107 individuals with cystinosis covering 30 countries came… Read More