Published April 29, 2024 by NORD
By Christine M. Photo by Rick Guidotti April is the month that marks two areas of my life that have had a dramatic impact on me: my search for answers …
Continue reading “April Showers Bring May Flowers: Christine’s National Volunteer Month Story”
Read morePublished April 24, 2024 by NORD
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians living with rare disease access critical care …
Read morePublished April 19, 2024 by NORD
By Bill S. Before becoming a NORD Running for Rare coach, I was a runner for over 30 years chasing my own goals, and a coach for 10 years helping other …
Read morePublished April 16, 2024 by NORD
By Sarah F. I never imagined I would become a rare disease advocate or volunteer, but my life’s journey led me to this role. Two key moments in my life …
Read morePublished April 11, 2024 by NORD
By Shannon J. PT, DPT, OCS November 10, 2018, was the day that rocked our world. I was a first-time aunt, and my sister a first-time mother, to what we …
Read morePublished April 10, 2024 by NORD
MONTPELIER, VT—On April 10, advocates from NORD and our Rare Action Network® joined five other local organizations at the Vermont State Capitol to call attention to an important piece of …
Continue reading “NORD and Vermont Advocates Convene in Montpelier Calling for Step Therapy Reform”
Read morePublished 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 more