Rare Disease News

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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Rare Disease Day and the Spotlight on NORD Member Organizations

Published April 4, 2022 by NORD

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Rare Disease Day Recap Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD …

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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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NORD Gives Back: Rare Disease & Family Life

Published January 24, 2022 by NORD

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Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content …

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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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