Rare Disease News

The Many Hats of a Caregiver: Elizabeth’s Story for Rare Disease Day

Published January 28, 2023 by NORD

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I am a caregiver to my 2 ½ year old son who has hypophosphatasia (HPP). He was diagnosed right before he turned 6 months. My son showed signs that he …

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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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Dear Congress: Don’t Leave Rare Disease Patients Behind

Published December 15, 2022 by NORD

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The following commentary by NORD President and CEO Peter Saltonstall originally appeared in The Well. Rare diseases are, by definition, uncommon. For a disease to qualify as rare, it must …

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Strong Like Sebastian: Kara’s Journey as a Rare Caregiver

Published October 28, 2022 by NORD

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My 11-year-old son Sebastian is an amazing boy who possesses incredible strength and makes me smile every day. He is a sweet, friendly, and caring boy, who wants to have …

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NORD Breakthrough Summit

Published July 11, 2022 by NORD

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Connecticut Establishes a Permanent Rare Disease Advisory Council

Published May 24, 2022 by NORD

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May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the …

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Living Rare, Living Stronger Store

Published May 20, 2022 by NORD

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