Epilepsy | REN

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

Oct 151 min read

Hot off the Presses - Sept2024

September News is out!

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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

May 172 min read

Get to Know CYFIP2 Network

Get to Know CYFIP2 Network and their community.

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Get to Know "Life" Association for Rare Diseases in Children

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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Get to Know the Pediatric Epilepsy Surgery Alliance

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...

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Get to Know CTNNB1 Connect and Cure (CCC)

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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Get to Know ASXL Rare Research Endowment (ARRE) Foundation

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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Get to Know Pediatric Epilepsy Research Consortium (PERC)

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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Get to Know Lennox-Gastaut Syndrome Foundation

REN

Sep 12, 20223 min read

Get to Know Lennox-Gastaut Syndrome Foundation

Introducing Lennox-Gastaut Syndrome (LGS) Foundation

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Introducing the New REN Map (Where’s the Rare?)!

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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Things You Should Know About the Rare Epilepsies & Social Wellness

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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Epilepsy in Asian Americans and Pacific Islanders

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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Spotlighting Rare Epilepsies this Purple Day

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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