In Their Own Words - Dravet Syndrome Foundation Spain
Meet Dravet Syndrome Foundation Spain and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many...
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REN
1 day ago1 min read
In Their Own Words - Child Neurology Foundation (CNF)
Meet Child Neurology Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members...
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REN
Nov 141 min read
Hot off the Presses - Nov 2024
Catch up on all the NEWs across the rare epilepsies.
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REN
Oct 161 min read
Hot off the Presses - October 2024
Catch up on all the NEWs across the rare epilepsies.
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REN
Oct 166 min read
Get to Know The LCC Foundation
Learn about About LCC/Labrune syndrome
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REN
Aug 231 min read
Hot off the Presses - August 2024
Check out REN's latest newsletter here .
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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
Aug 221 min read
In Their Own Words - PERC
Meet Pediatric Epilepsy Research Consortium (PERC) with Jane McCabe We are thrilled to announce a new VIDEO series introducing REN's many...
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REN
Jul 311 min read
In Their Own Words - LGS
Another video from REN Member LGS - in their own words. Thanks Jennifer!
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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
May 172 min read
Get to Know CYFIP2 Network
Get to Know CYFIP2 Network and their community.
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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
Mar 312 min read
Get to Know The Rory Belle Foundation
About NARS1 Disorder The first pathogenic variants for NARS1(asparaginyl-tRNA synthetase 1) disorder were reported in 2020. The NARS1...
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meranelakel9
Mar 194 min read
Get to Know the Pediatric Epilepsy Surgery Alliance
About Pediatric Epilepsy Surgery: Surgery is the least utilized treatment in all of epilepsy. Many different surgeries can stop or reduce...
414 views0 comments
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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