Published April 24, 2024 by NORD
By Kate R., MS, CGC From a young age, 14 to be exact, I knew I wanted to work in the world of rare diseases as a genetic counselor. I …
Read morePublished February 23, 2024 by NORD
By Sareena Z. My name is Sareena and I was diagnosed with severe Factor VII deficiency when I was two months old. I am now 28 years old. Factor VII …
Continue reading “Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day”
Read morePublished November 17, 2023 by NORD
The National Organization for Rare Disorders (NORD) has added new, easy-to-print one-pagers on “Genetic Testing for Rare and Undiagnosed Diseases” in English and Spanish (“Pruebas Genéticas Para Enfermedades Poco Comunes Y …
Continue reading “New Resources on Genetic Testing”
Read morePublished September 30, 2023 by NORD
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. At 8 years old, Jenny was diagnosed with Familial …
Continue reading “Finding Purpose in Advocacy: Jenny’s Story in Honor of Rare Cancer Day”
Read morePublished June 17, 2023 by NORD
With Phillip Maderia and his daughter, Abby Phillip, you were just honored at NORD’s Rare Impact Awards as the “Father of Running for Rare.” In your words, how did #Running4Rare …
Read morePublished April 21, 2023 by NORD
It is National Volunteer Week, which has us reflecting on the tremendous contributions of NORD’s volunteers across the country who help create, elevate, and promote our work on behalf of …
Continue reading “A Thank You to NORD’s Volunteers”
Read morePublished April 10, 2023 by NORD
Kitt C. I was officially diagnosed with tumor necrosis factor receptor-associated periodic syndrome (TRAPS) on May 31, 2022. After years of experiencing illness from flares, I finally found the answer …
Continue reading “The Importance of Understanding: Kitt’s Rare Disease Story”
Read morePublished March 17, 2023 by NORD
Join Kasey Baker in running a local race or donate to her efforts to raise awareness and celebrate 40 years of NORD, here. After seeing the daily struggles of friends …
Continue reading “Why I’m Running 40 Road Races for Rare Diseases This Year”
Read morePublished March 10, 2023 by NORD
By Catara C. Tira is a rockstar; she is constantly bringing so much joy and light to everyone surrounding us. To her, she’s no different than anyone else and treats …
Continue reading “Rare Rockstar Tira’s Story”
Read morePublished January 27, 2023 by NORD
The National Organization for Rare Disorders (NORD) has added new animated videos in English and Spanish on Genetic Testing for Rare and Undiagnosed Diseases to the NORD Rare Disease Video …
Continue reading “NORD Adds New Videos on Genetic Testing to Rare Disease Video Library”
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