Rare Disease News

Rare Disease Day: Kira’s Story

Published January 21, 2022 by NORD

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Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Kira’s journey with a Tatton-Brown Rahman …

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NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

Published January 20, 2022 by NORD

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RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced …

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NORD Gives Back: Working, Aging or Living with a Rare Disease

Published January 18, 2022 by NORD

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After being diagnosed with a rare disease, your life can change drastically. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living …

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NORD Gives Back: The Future of Rare

Published January 14, 2022 by NORD

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As we enter this new year, we are looking toward the future of the rare disease community. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content …

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NORD’s Rare Cancer Coalition 2021 Year In Review

Published January 12, 2022 by NORD

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NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and …

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Rare Disease Day: Finn’s Story

Published January 11, 2022 by NORD

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Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Finn’s congenital muscular dystrophy (CMD) journey …

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Far From “Normal”: Brenda’s Rare Disease Story

Published December 27, 2021 by NORD

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I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in …

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NORD Gives Back: Partnership and Connection

Published December 22, 2021 by NORD

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It’s the holiday season, so let’s take time to celebrate the rare disease community. During this joyful time, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual …

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Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Published December 20, 2021 by NORD

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In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious …

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Dianna’s Story as a Rare Survivor

Published December 3, 2021 by NORD

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Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals …

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