Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced …
On the show today, Matthew Zachary welcomes Jo-Ann D’Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is …
Washington, DC, May 18, 2021—The National Organization for Rare Disorders (NORD®) announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined …
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and …
Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria …
The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is …
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer …
Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare …
On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, …