Being Named State Ambassador
August 23, 2017
To help drive the efforts of the Rare Action Network℠, NORD launched the State Ambassador Program. State Ambassadors are volunteers in a leadership position responsible for establishing and building a strong grassroots network of rare disease advocates within their state to help increase awareness of rare diseases and the challenges patients and their families face. […]
Advocacy Alert: Illinois Rare Disease Commission Bill
July 15, 2016
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 […]
