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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
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
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
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
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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REN
Feb 17, 20233 min read
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...
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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
Mar 15, 20222 min read
Things You Should Know About the Rare Epilepsies and Sleep
March 13-19 marks Sleep Awareness Week 2022! Sleep Awareness Week celebrates and encourages healthy sleep. For those touched by the rare...
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REN
Feb 14, 20222 min read
International Epilepsy Day 2022
Celebrate International Epilepsy Day & The Rare Epilepsies on February 14! Celebrated on the second Monday in February and founded by The...
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REN
Feb 9, 20222 min read
Black Americans and Rare Epilepsies
Black History Month is celebrated all throughout February. The purpose of this month is to honor African Americans from every time...
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REN
Nov 2, 20212 min read
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
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