Rare Disease News

Audrey’s Story in Honor of Undiagnosed Day

Published April 25, 2022 by NORD

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I am a parent of three children. Our two sons are medically complex with an unnamed syndrome. Through our parenting journey, we have faced epilepsy, autism, ADHD, global developmental delays, …

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Zane’s Diagnostic Odyssey: His Mother’s Story in Honor of Undiagnosed Day

Published April 19, 2022 by NORD

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While in uterus, Zane had an abnormally large bladder that did not drain properly; however, no diagnosis was given at that time. The doctors monitored Zane closely starting around 20 …

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The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Published April 19, 2022 by NORD

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Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research …

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ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval

Published April 8, 2022 by NORD

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90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway April 8, 2022, Washington, DC – This week, the National Organization …

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Community, Action and Being Grateful: Rowan’s Rare Disease Journey

Published February 22, 2022 by NORD

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Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it …

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Rare Disease Day: Riaan’s Story

Published February 17, 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 Riann’ s journey with Cockayne Syndrome …

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Rare Disease Day: Bradley’s Story

Published February 9, 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 Bradley’s journey with Infantile Myofibromatosis. If …

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NORD Gives Back: Advocacy and Action

Published February 3, 2022 by NORD

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Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare …

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Rare Disease Day: Yara’s Story

Published February 1, 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 Yara’s journey with Jordan’s Syndrome and …

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Rare Disease Day: Elizabeth’s Story

Published January 27, 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 Elizabeth’s journey with SUOX mutation/late onset …

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