Apr. 15, 2016
Posted by Jennifer Huron
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. The bill would also provide educational resources for elected leaders on critical issues related to access, coverage, and the diseases themselves.
NEXT STEP: the bill needs to pass in the state Senate. If you are interested in supporting it, contact [email protected].
Thank you! This progress for the 1 in 10 Americans with rare diseases would not be possible without the support and collaboration between NORD and our Members based in Illinois:
Amyloidosis Support Groups Inc.
Cicatricial Alopecia Research Foundation (CARF)
Cystic Fibrosis Research, Inc.
Cystinosis Research Network
National Foundation for Ectodermal Dysplasias
National Organization for Rare Disorders (NORD)
United Leukodystrophy Foundation
Thank you – together we are strong!
Sign up to receive NORD’s Advocacy Alerts and news about legislation in your state. Email [email protected].