For the first time in history, the Galactosemia community came together for a historic meeting to share their experiences with the disease and treatments – and hopes for the future – with the US Food and Drug Administration (FDA). NORD is proud to be one of many patient organizations… Read More
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
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
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
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease,… Read More
