Illinois Archives - NORD (National Organization for Rare Disorders)

Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Written by Jennifer Huron on April 15, 2016

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…. Read More

Illinois Man Uses His Myelofibrosis Story to Help Others

Written by on July 16, 2014

The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More

Archives for: April 15th, 2016

Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Written by Jennifer Huron on April 15, 2016

Illinois Man Uses His Myelofibrosis Story to Help Others

Written by on July 16, 2014

Alone we are rare. Together we are strong.®