Rare Disease News

Ray Stevens is Taking Rare Disease Awareness to New Heights

Published April 7, 2021 by NORD

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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 …

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Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day

Published February 28, 2021 by NORD

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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 …

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Jason and Nola’s Story in Honor of Rare Disease Day

Published February 26, 2021 by NORD

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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 …

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Valencia Bella’s Story in Honor of Rare Disease Day

Published February 26, 2021 by NORD

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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 …

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NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Published February 25, 2021 by NORD

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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 …

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Tara O’s Story in Honor of Rare Disease Day

Published February 24, 2021 by NORD

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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 …

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National Attention for Rare Disease Day Airs on Lifetime Television

Published February 24, 2021 by NORD

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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. …

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NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

Published February 23, 2021 by NORD

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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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Ramona’s Story in Honor of Rare Disease Day

Published February 23, 2021 by NORD

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I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I …

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Tara Z’s Story in Honor of Rare Disease Day

Published February 23, 2021 by NORD

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I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms started after I lost my former husband to …

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