![\"HDR_PolicyAlert_2\"](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2016\/04\/HDR_PolicyAlert_2.jpg\")
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UPDATE: \u00a0<\/strong>July 11, 2016<\/strong><\/p>\n Illinois HB 4576 is close to passing! \u00a0This bill would establish a Rare Disease Commission that would give patients \u2013 many of whom are too young or sick to speak for themselves \u2013 a voice in the state government. \u00a0The bill is awaiting Governor Bruce Rauner’s signature before it is passed into law. \u00a0We recently sent a letter to Governor Rauner asking him to sign the bill – read the letter here<\/a>.<\/p>\n Interested in getting involved in rare disease advocacy in your state or on the federal level?\u00a0Sign up<\/a> to receive policy-related news and alerts from NORD in your inbox.\u00a0<\/em><\/strong><\/p>\n May 31, 2016<\/strong><\/p>\n Advocacy Alert: Illinois Rare Disease Commission Bill Passes in House Today,\u00a0HB 4576 <\/strong>passed in both chambers and is now going to the governor. <\/strong><\/p>\n The House Bill seeks to establish a Rare Disease Commission that would give patients \u2013 many of whom are too young or sick to speak for themselves \u2013 a voice in the state government. \u00a0The bill would also provide educational resources for elected leaders on critical issues related to access, coverage, and the diseases themselves.\u00a0Supporting 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\u2010patient relationship to access issues to vital life\u2010saving medications and therapies, the Commission will work as a partner with legislative and administration leaders.<\/p>\n NEXT STEP: <\/strong>the bill is heading to the Illinois Governor for his signature.<\/p>\n Thank you! \u00a0This 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:<\/p>\n Amyloidosis Support Groups Inc. Also, a special thank you to RareAction member, Ann Weaver, a great advocate who spearheaded the Rare Disease Day event in Illinois in 2016.<\/em><\/p>\n Thank you <\/em>\u2013 together we are strong!<\/em><\/p>\n
\nHB4576 is heading to the Illinois Governor for his signature<\/em><\/p>\n
\nCystic Fibrosis Research, Inc.
\nCystinosis Research Network
\nEveryLife Foundation for Rare Diseases
\nNational Foundation for Ectodermal Dysplasias
\nNational Organization for Rare Disorders (NORD)
\nNeurofibromatosis Network
\nPKU Organization of Illinois
\nUnited Leukodystrophy Foundation<\/p>\n