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 …
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 …
Since 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, …
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 …
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 …
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 …
By 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 …
NORD’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 …