The 2025 NORD® Rare Diseases & Orphan Products Breakthrough Summit® was more than a gathering. It was a declaration. Well over 800 patient advocates, families, researchers, clinicians, and industry showed…
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The National Organization for Rare Disorders (NORD) will honor a distinguished group of individuals and industry leaders for their contributions to help improve the lives of more than 30 million …
Read moreBy 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 moreSince NORD launched Project RDAC in 2020, Mississippi becomes the 28th state to establish an RDAC to better focus public policy efforts for people living with rare diseases. JACKSON, MS, …
Read moreBy 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 moreBy 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 moreMONTPELIER, 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 moreBy 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 moreBy Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) How should lab developed diagnostic tests (LDTs) be regulated? As the House Energy …
Read moreNORD’s State Report Card grades states on policies that benefit or jeopardize health care coverage, access, and affordability for people living with rare diseases The National Organization for Rare Disorders …
Read moreBy Gabrielle Z. A very special person once told me: “You are dealt the cards in this life that only you are meant to handle.” My name is Gabrielle but …
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