Rare Disease News

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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Rare Rockstar Tira’s Story

Published March 10, 2023 by NORD

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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 …

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NORD Adds New Videos on Genetic Testing to Rare Disease Video Library

Published January 27, 2023 by NORD

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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 …

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The Orphan Drug Act Turns 40: NORD Celebrates Its Impact on Rare Diseases

Published January 4, 2023 by NORD

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Individuals suffering with rare diseases had very few therapeutic options 40 years ago. But that began to change with the stroke of a pen by then-President Ronald Reagan in January …

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My Anniversary Wish for the Rare Disease Community

Published January 4, 2023 by NORD

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Dear Friends, Happy anniversary to us, the rare disease community. Forty years ago today marked a turning point for people living with rare diseases and their families. The Orphan Drug …

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Congress’ Year-End Legislative Package Delivers for the Rare Community

Published December 23, 2022 by NORD

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As part of H.R. 2617, Congress today delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought …

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