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Archives for: July 15th, 2016

Advocacy Alert: Illinois Rare Disease Commission Bill

Written by Heidi Ross on July 15, 2016

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… Read More

Campaign to Educate State Legislators for Rare Disease Day

Written by admin on December 14, 2012

Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28,… Read More