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Archives for: September 13th, 2021

NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

Written by Rohan Narayanan on September 13, 2021

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the more than 25 million Americans with rare diseases, issued the following statement in response to upcoming congressional consideration of the Build Back Better Act in the House Committee on Ways and Means:

Peter Saltonstall, CEO and President… Read More

COVID-19 Resources for Non-profit Leaders and the Community

Written by Valaree DonFrancesco on March 20, 2020

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus… Read More

The Will to Live and the Strength for a Cure

Written by admin on December 18, 2014

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he… Read More