Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account …
It is Season Two of NORDPod, and we’re kicking it off in style with a “Last Year Tonight”-themed episode with NORD’s President and CEO, Peter Saltonstall, from his undisclosed bunker …
Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well known. Bob lost …
I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect …
Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs …
PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD …
The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare …
Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and I also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several …
This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. …