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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meranelakel9
Oct 18, 20231 min read
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...
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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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Deven Parasnis
Sep 6, 20222 min read
Screening for Epilepsy in Newborns is Beneficial
This September marks the annual Newborn Screening Awareness Month. This month is dedicated to celebrating and raising awareness for...
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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
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
Oct 13, 20212 min read
Mental Illness Awareness Week and the Rare Epilepsies - Oct. 3-9th
REN acknowledges that other organizations recognize differences between “mental health conditions” versus “mental illnesses” as a...
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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
Sep 15, 20213 min read
Recursos en Español para epilepsias raras, celebrando el Mes de la Herencia Hispana (9/ 15-10/15)
Del 15 de Septiembre al 15 de Octubre, se celebra el Mes Nacional de la Herencia Hispana, un mes dedicado a celebrar la historia y los...
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REN
Sep 7, 20213 min read
Spanish Language Resources for Rare Epilepsies, Celebrating Hispanic Heritage Month (9/ 15-10/15)
September 15 - October 15 celebrates National Hispanic Heritage Month - a month dedicated to celebrating the history and accomplishments...
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