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Rare Caregiver Respite Program

NORD Rare Caregiver Respite Program provides rare caregivers with relief.
Marshall Summar, M.D., CNRDI

Connecting More People to Optimal Rare Disease Care

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An update on our partnership with Children's National Rare Disease Institute.
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Eric Dube, Ph.D., Interviewed by Rare Revolution

July 1, 2020 -- Our CEO and president Eric Dube, Ph.D., recently spoke with Rare Revolution Magazine about motivation, inspiration, challenges and hope.
Little boy in a blue shirt in a tree

Meet Thomas

Thomas, living with peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), talks about his family, favorite activities and shares a knock-knock joke.
Man in button-up shirt standing in front of fire engine

Meet Paul

Paul, living with cystinuria, talks about the critical role of water – both in his profession and for managing his rare condition.
Gayle Sweeny, International Cystinuria Foundation

Meet Gayle Sweeney

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Gayle Sweeney is on a mission to show people living with cystinuria and their loved ones – how to advocate for themselves. She has built a worldwide online community of people touched by this challenging genetic disease.
A man in a blue sweater looking into camera

Meet Damian

When Damian was 18 years old and a freshman in college, he woke up with stabbing pain on his left side. He skipped class and stayed in bed, only getting up to use the bathroom. Eventually felt better. In retrospect, he thinks now that was his first stone.
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Rare Disease Caregiving in America

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The National Alliance for Caregiving (NAC) in partnership with Global Genes set out to examine the issues and challenges facing those who provide unpaid care to someone with a rare disease.