Illinois' Rare Disease Commission close to passing bill
Now, the bill just needs a signature from Gov. Bruce Rauner. When signed, it will become law. Rauner recently received a letter from the National Organization for Rare Disorders (NORD) asking him to sign the bill into law.
The bill is specifically for patients who are too sick or young to have their own voice in government. It will also offer educational resources -- specifically to elected leaders -- so that they can gain more information about the coverage, access and illnesses included in the law.
Improving a rare disease community’s medical needs reaches beyond timely screening and accurate diagnosis. Ultimately, the Rare Disease Commission offers patients a chance to be heard in state government. If the government leaders gain access to more information about the diseases, health experts believe more progress will be made in the rare disease community.
NORD joins several organizations in supporting this bill: Neurofibromatosis Network, Cystinosis Research Network, PKU Organization of Illinois, Amyloidosis Support Groups Inc., National Foundation for Ectodermal Dysplasias, Cystic Fibrosis Research Inc., EveryLife Foundation for Rare Diseases, and United Leukodystrophy Foundation.