Published July 2, 2025 by NORD
In this NORD Guest Blog, the founder of the Parry Romberg Foundation discusses the 1825-2025 history of PRS and what this moment means for hundreds of Americans with this life-altering …
Continue reading “After Two Centuries, the Parry Romberg Syndrome Community Needs Answers”
Read morePublished April 8, 2025 by NORD
The FDA approval of the first treatment for Friedreich’s Ataxia (FA) on Rare Disease Day in 2023 marked a significant milestone for the estimated 5,000 people in the U.S. and …
Continue reading “Guest Blog: The Power of Patient Advocacy in Drug Development”
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