Published May 22, 2026 by NORD
Congress is currently considering the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), a bipartisan piece of legislation that would recognize genetic counselors as Medicare providers, allowing them to …
Continue reading “Access to Answers — Bridging the Gap to Genetic Expertise”
Read morePublished February 23, 2026 by NORD
NORD Calls on Nation to “Show Your Stripes” on Global Rare Disease Day, Feb. 28 NORWELL, Mass., FEB. 23, 2026 – The National Organization for Rare Disorders (NORD®) is calling attention to rare diseases …
Continue reading “More Than 30 Million Americans Living with Rare Diseases”
Read morePublished May 1, 2025 by NORD
Congress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving health care coverage and services to those who need it most. What is at stake …
Continue reading “Rare Faces of Medicaid: What’s at Stake for the Rare Community?”
Read morePublished 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 …
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