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Apr. 15, 2016

TOPIC: Advocacy, Get Involved, Patients & Members

Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Posted by Jennifer Huron

HDR_PolicyAlert_2

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 tim.boyd@rareaction.org.

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)
Neurofibromatosis Network
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 tim.boyd@rareaction.org.

5 Responses to “Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission”

  1. jim gallagher says:

    [lease pass thisbill

  2. jim gallagher says:

    please pass this bill

  3. JoAnn Williamson says:

    Niemann Pick Disease, Type C

  4. Suzie Williams says:

    Please, pass this bill!

  5. Suzie Williams says:

    I want to see this pass in the state of Illinois, where my cousin, her husband and their daughter, (my second cousin lives, since I have been associated with ‘NORD’, when I was diagnosed with a rare disease called ‘Medullay Sponge Kidneys’, which is a rare birth defect, along with Crohn’s Disease that I inherented from my Nanny (Maternal Grandmother) and second cousin, also on my Mom’s side of the family!

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