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In Their Own Words
Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors
REN
Jul 11, 20241 min read
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Get to Know "Life" Association for Rare Diseases in Children
About "Life" Association for Rare Diseases in Children Our association is an umbrella association of patients suffering from various rare...
REN
Apr 24, 20242 min read
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Get to Know CTNNB1 Connect and Cure (CCC)
About CTNNB1 syndrome CTNNB1 syndrome is a rare neurodevelopmental disorder caused by variants in the CTNNB1 gene, located at 3p21. As of...
meranelakel9
Jan 16, 20242 min read
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Get to Know ASXL Rare Research Endowment (ARRE) Foundation
About ASXL-related disorders ASXL-related disorders are ultra-rare neurodevelopmental disorders typically caused by a de novo change to...
meranelakel9
Nov 29, 20234 min read
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Things You Should Know About the Rare Epilepsies & Social Wellness
The month of July marks Social Wellness Month! Social Wellness Month is meant to highlight the positive effects of healthy relationships...
Justin Wan
Jul 21, 20222 min read
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Epilepsy in Asian Americans and Pacific Islanders
This May celebrates Asian American and Pacific Islander Heritage Month. This month is dedicated to celebrating the contributions Asian...
REN
May 24, 20222 min read
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Get to Know Cure GABRB2
About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...
REN
Apr 22, 20222 min read
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Spotlighting Rare Epilepsies this Purple Day
Purple Day takes place annually on March 26 as an international effort to spread awareness and resources about epilepsy. It’s a...
REN
Mar 24, 20222 min read
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Get to Know Jordan's Guardian Angels
About Jordan's Syndrome (JS) or PPP2R5D-Related Neurodevelopmental Disorder Jordan’s Syndrome is a neurodevelopmental disorder caused by...
REN
Mar 22, 20225 min read
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Rare Disease & Rare Epilepsies
MANY CAUSES OF EPILEPSY ARE RARE Although epilepsy as a diagnosis is not rare, many causes of epilepsy are rare. When the underlying...
REN
Feb 9, 20222 min read
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