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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
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
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
Sep 12, 20223 min read
Get to Know Lennox-Gastaut Syndrome Foundation
Introducing Lennox-Gastaut Syndrome (LGS) Foundation
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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 22, 20225 min read
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...
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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
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...
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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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REN
Sep 16, 20212 min read
Get to Know NR2F1 Foundation
Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.
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REN
Jul 30, 20213 min read
Sibling Support and Resources
A special thanks to Alycia Halladay (Autism Science Foundation), Betsy Pilon (Hope for HIE), Brandy Fureman (Epilepsy Foundation),...
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REN
Jul 30, 20212 min read
Tips on Finding Interns
Several REN MEMBERS have inquired how to find interns. Advice from our Members follows below. Thanks in advance to Kari Rosbeck (TS...
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