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Jul. 15, 2016

TOPIC: Advocacy, Patients & Members

Advocacy Alert: Illinois Rare Disease Commission Bill

Posted by Tim Boyd

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 bill is awaiting Governor Bruce Rauner’s signature before it is passed into law.  We recently sent a letter to Governor Rauner asking him to sign the bill – read the letter here.

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May 31, 2016

Advocacy Alert: Illinois Rare Disease Commission Bill Passes in House
HB4576 is heading to the Illinois Governor for his signature

Today, HB 4576 passed in both chambers and is now going to the governor.

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. Supporting the medical needs of the rare disease community is about more than just accurate and timely screening. The Illinois Rare Disease Commission would give rare disease patients a voice in our state government and provide educational resources for elected leaders on critical issues related to access, coverage, and the diseases themselves. From providing information on the healthcare provider‐patient relationship to access issues to vital life‐saving medications and therapies, the Commission will work as a partner with legislative and administration leaders.

NEXT STEP: the bill is heading to the Illinois Governor for his signature.

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.
Cystic Fibrosis Research, Inc.
Cystinosis Research Network
EveryLife Foundation for Rare Diseases
National Foundation for Ectodermal Dysplasias
National Organization for Rare Disorders (NORD)
Neurofibromatosis Network
PKU Organization of Illinois
United Leukodystrophy Foundation

Also, a special thank you to RareAction member, Ann Weaver, a great advocate who spearheaded the Rare Disease Day event in Illinois in 2016.

Thank you together we are strong!

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One Response to “Advocacy Alert: Illinois Rare Disease Commission Bill”

  1. Jeffrey Crowell says:

    I have sent a request to be appointed to the commission through State Rep. Stephanie Kifowit. I suffer from a rare autoimmune disorder called MYASTHENIA GRAVIS. It is a neuromusculat disorder. I am with CONQUER MG. MG is often misdiagnosed as a Stroke. I am very interested in educating others about MG and other rare disorders.

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