Written by Rohan Narayanan on October 13, 2022
New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey
Washington, DC, October 13, 2022— Today, the Rare Disease Diversity Coalition (RDDC), the nation’s leading voice for alleviating the disproportionate burden of rare diseases on communities of color, and… Read More
Written by Rohan Narayanan on June 16, 2022
The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. Media coverage has highlighted the stories of desperate parents driving hours from their homes to find formula or being… Read More
Written by Rohan Narayanan on March 3, 2022
NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community
Washington, DC,… Read More
Written by Rohan Narayanan on August 27, 2021
August 27, 2021 – Registration is now open for the NORD Rare Diseases and Orphan Products Breakthrough Summit®. The NORD Summit, one of the largest global events in rare disease, brings together experts and leaders from patient advocacy groups, government, industry, and academia to discuss the current and critical topics in rare… Read More
Written by Valaree DonFrancesco on February 24, 2021
Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and I also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several… Read More
