Meet the KARES Foundation: Supporting Families Affected by KDM5C KDM5C-related disorder, also known as Claes-Jensen syndrome, is a rare...

Learn about About LCC/Labrune syndrome

Get to Know CYFIP2 Network and their community.

About "Life" Association for Rare Diseases in Children Our association is an umbrella association of patients suffering from various rare...

About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...

About NARS1 Disorder The first pathogenic variants for NARS1(asparaginyl-tRNA synthetase 1) disorder were reported in 2020. The NARS1...

About Pediatric Epilepsy Surgery: Surgery is the least utilized treatment in all of epilepsy. Many different surgeries can stop or reduce...

About CTNNB1 syndrome CTNNB1 syndrome is a rare neurodevelopmental disorder caused by variants in the CTNNB1 gene, located at 3p21. As of...

About ASXL-related disorders ASXL-related disorders are ultra-rare neurodevelopmental disorders typically caused by a de novo change to...

About PERC The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and...

Introducing Lennox-Gastaut Syndrome (LGS) Foundation

The newly added REN Map. The Rare Epilepsy Network has created a new page for families and clinicians to use! With 80+ organizations...

The month of July marks Social Wellness Month! Social Wellness Month is meant to highlight the positive effects of healthy relationships...

This May celebrates Asian American and Pacific Islander Heritage Month. This month is dedicated to celebrating the contributions Asian...

About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...

Purple Day takes place annually on March 26 as an international effort to spread awareness and resources about epilepsy. It’s a...

About Jordan's Syndrome (JS) or PPP2R5D-Related Neurodevelopmental Disorder Jordan’s Syndrome is a neurodevelopmental disorder caused by...

March 13-19 marks Sleep Awareness Week 2022! Sleep Awareness Week celebrates and encourages healthy sleep. For those touched by the rare...

Celebrate International Epilepsy Day & The Rare Epilepsies on February 14! Celebrated on the second Monday in February and founded by The...

Black History Month is celebrated all throughout February. The purpose of this month is to honor African Americans from every time...