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REN
Aug 231 min read
In Their Own Words - PAME
Meet Partners Against Mortality in Epilepsy (PAME) and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing...
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REN
Jul 111 min read
In Their Own Words
Learn about ASXL Rare Research Endowment Foundation and ASXL-related disorders
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REN
Jul 111 min read
In Their Own Words
Meet CURE GRIN with Meagan Hutchinson We are thrilled to announce a new VIDEO series introducing REN's many Members and Partners in their...
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REN
Jul 111 min read
In Their Own Words
Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors
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REN
May 234 min read
Get to Know CRELD1 Warriors
An international movement to care for children with CRELD1.
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REN
Apr 242 min read
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...
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REN
Apr 242 min read
Get to Know DYNC1H1 Association
About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...
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meranelakel9
Jan 162 min read
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...
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meranelakel9
Nov 29, 20234 min read
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...
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Justin Wan
Aug 4, 20222 min read
Introducing the New REN Map (Where’s the Rare?)!
The newly added REN Map. The Rare Epilepsy Network has created a new page for families and clinicians to use! With 80+ organizations...
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Justin Wan
Jul 21, 20222 min read
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...
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REN
May 24, 20222 min read
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...
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REN
Apr 22, 20222 min read
Get to Know Cure GABRB2
About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...
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REN
Mar 24, 20222 min read
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...
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REN
Nov 20, 20202 min read
Tips to Navigate AES
The annual American Epilepsy Society is just around the corner. AES2020 is slated for December 4-8 and will be a virtual event for...
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