Published April 29, 2021 by NORD
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 …
Continue reading “New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey”
Read morePublished April 8, 2021 by NORD
For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare …
Continue reading “NORD Expands Gene Therapy Offerings Through New Online Resources”
Read morePublished April 7, 2021 by NORD
In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help …
Continue reading “Ray Stevens is Taking Rare Disease Awareness to New Heights”
Read morePublished February 28, 2021 by NORD
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 …
Continue reading “Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day”
Read morePublished February 26, 2021 by NORD
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 …
Continue reading “Jason and Nola’s Story in Honor of Rare Disease Day”
Read morePublished February 26, 2021 by NORD
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 …
Continue reading “Valencia Bella’s Story in Honor of Rare Disease Day”
Read morePublished February 25, 2021 by 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 …
Continue reading “NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day”
Read morePublished February 24, 2021 by NORD
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 …
Continue reading “Tara O’s Story in Honor of Rare Disease Day”
Read morePublished February 24, 2021 by NORD
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. …
Continue reading “National Attention for Rare Disease Day Airs on Lifetime Television”
Read morePublished February 23, 2021 by NORD
Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be …
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