Rare Disease News

Genetic Counselor to Camp Counselor: Kate’s Story in Honor of National Volunteer Month

Published April 24, 2024 by NORD

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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 …

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Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day

Published February 23, 2024 by NORD

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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 …

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New Resources on Genetic Testing

Published November 17, 2023 by NORD

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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 …

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Finding Purpose in Advocacy: Jenny’s Story in Honor of Rare Cancer Day

Published September 30, 2023 by NORD

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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 …

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Father & Daughter Interview: The Legacy of #Running4Rare from the Perspective of the Family Who Started It All

Published June 17, 2023 by NORD

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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 …

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A Thank You to NORD’s Volunteers

Published April 21, 2023 by NORD

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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 …

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The Importance of Understanding: Kitt’s Rare Disease Story

Published April 10, 2023 by NORD

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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 …

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Sesiones de escucha comunitarias latinas y hispanohablantes

Published March 29, 2023 by NORD

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Read this page in English Estamos muy contentos en NORD de poder haber organizado una serie de sesiones de escucha comunitarias presenciales y virtuales. Estas sesiones son exclusivas para personas …

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Latino/a/x & Hispanohablantes Community Listening Sessions

Published March 29, 2023 by NORD

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Leer en español NORD is excited to be hosting a series of in-person and virtual community listening sessions exclusively for Latino/a/x people affected by rare diseases in the United States. …

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Why I’m Running 40 Road Races for Rare Diseases This Year

Published March 17, 2023 by NORD

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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 …

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