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
This week, the Illinois House passed HB 4576. The House Bill seeks to 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…. Read More
The 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