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Archives for: September 8th, 2022

NORD Statement on Passage of the Inflation Reduction Act

Written by Rohan Narayanan on August 12, 2022

Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:  

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals… Read More

Rebekah’s Rare Story: How Mrs. Massachusetts Petite Spreads Hope & Awareness

Written by Julie Ostroff on July 29, 2022
Rebekah standing in front of a pink background wearing a crown and a sash that reads "Petite USA Mrs. Massachusetts." Image reads "Rebekah Britto Platform: National Organization for Rare Disorders (NORD) 'A disease may be rare but hope should not be.'"

I’m Rebekah Britto, Mrs. Massachusetts Petite 2022, and I have both Chiari malformation and Ehlers-Danlos syndrome (EDS). My rare disease journey began in 2013, when I started struggling with symptoms including passing out, vertigo, tinnitus, vision disturbances, and more. It took about a year of going back and forth between… Read More

NORD Statement on Dobbs v. Jackson

Written by Rohan Narayanan on July 6, 2022

Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely diagnostics, services, treatments, and cures. The ability of our community to access the appropriate medical procedures and care they need,… Read More