About Angelman syndrome (AS) Angelman syndrome (AS) is a rare neurogenetic disorder that affects about one in 15,000 people, or...

Meet KdVS Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members and...

REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and...

Meet LCC Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members and Partners...

Meet Dravet Syndrome Foundation Spain and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many...

Meet Child Neurology Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members...

Learn about About LCC/Labrune syndrome

Meet Partners Against Mortality in Epilepsy (PAME) and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing...

Meet Pediatric Epilepsy Research Consortium (PERC) with Jane McCabe We are thrilled to announce a new VIDEO series introducing REN's many...

Another video from REN Member LGS - in their own words. Thanks Jennifer!

Learn about ASXL Rare Research Endowment Foundation and ASXL-related disorders

Meet CURE GRIN with Meagan Hutchinson We are thrilled to announce a new VIDEO series introducing REN's many Members and Partners in their...

Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors

An international movement to care for children with CRELD1.

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...