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REN
Aug 231 min
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
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
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
In Their Own Words
Learn about ASXL Rare Research Endowment Foundation and ASXL-related disorders
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REN
Jul 111 min
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
In Their Own Words
Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors
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REN
May 244 min
Get to Know CRELD1 Warriors
An international movement to care for children with CRELD1.
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REN
May 172 min
Get to Know CYFIP2 Network
Get to Know CYFIP2 Network and their community.
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REN
Apr 242 min
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
Get to Know DYNC1H1 Association
About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...
114 views0 comments
meranelakel9
Mar 312 min
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
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...
410 views0 comments
meranelakel9
Jan 162 min
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
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...
56 views0 comments
meranelakel9
Oct 18, 20231 min
Get to Know Shine Syndrome Foundation
About DLG4 Synaptopathy DLG4-related synaptopathy is the medical diagnostic term, though most families refer to the disorder as SHINE...
291 views0 comments
REN
Feb 17, 20233 min
Get to Know Pediatric Epilepsy Research Consortium (PERC)
About PERC The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and...
249 views0 comments
REN
Sep 12, 20223 min
Get to Know Lennox-Gastaut Syndrome Foundation
Introducing Lennox-Gastaut Syndrome (LGS) Foundation
180 views0 comments