Published April 5, 2024 by NORD
By Eric W. “Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador. I was in my …
Read morePublished January 25, 2024 by NORD
Jonathan Kowalske, rare disease Dad and co-founder of Milwaukee’s Component Brewing Company, has created a national campaign in partnership with the National Organization for Rare Disorders (NORD) to raise awareness and …
Continue reading “Guest Blog: Why I Created Zebra Hop”
Read morePublished November 14, 2023 by NORD
The holiday season is almost here! To bring seasonal cheer and remind one another that no one in the rare community fights alone, NORD will be creating and delivering care …
Continue reading “Help NORD Spread Cheer This Holiday Season! “
Read morePublished October 28, 2023 by NORD
Celebrating internal medicine physicians on National Internal Medicine Day We continue to be inspired by our advocates and volunteers who drive recognition of rare disease as an urgent public health …
Continue reading “Volunteer Spotlight: Dr. Kristen Kingzett”
Read morePublished January 31, 2023 by NORD
By Karin Hoelzer Rare disease patients and caregivers often ask me whether they should really engage in health policy. Is it really worth the trouble? In short, the answer is …
Read morePublished October 6, 2022 by NORD
NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …
Continue reading “Help for rare disease patients impacted by recent 2022 hurricanes”
Read morePublished July 19, 2022 by NORD
On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act …
Read morePublished July 12, 2022 by NORD
Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …
Read morePublished July 7, 2022 by NORD
Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …
Continue reading “A Conversation on Drug Development for Rare Diseases”
Read morePublished June 16, 2022 by NORD
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. …
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