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Archives for: June 9th, 2022

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Written by Rohan Narayanan on June 9, 2022

New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases

June 9, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease… Read More

NORD Response to New Draft of the Build Back Better Act

Written by Rohan Narayanan on October 29, 2021

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft of the Build Back Better Act (H.R. 5376):

Peter Saltonstall, CEO and President of NORD, stated: “As negotiations continue on the Build Back Better Act, NORD urges… Read More

Building on Policy Momentum

Written by Rose Gallagher on February 3, 2014

The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. … Read More