Rare Disease News

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 Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Published February 17, 2022 by NORD

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Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022 February 17, 2022, …

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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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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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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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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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How to Light Up for Rare – Rare Disease Day 2022

Published December 14, 2021 by NORD

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Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! As the US sponsor for Rare Disease Day, NORD is leading the call to light up …

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Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day

Published February 28, 2021 by NORD

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Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well known. Bob lost …

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