An international movement to care for children with CRELD1.

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 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...

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...

The annual American Epilepsy Society is just around the corner. AES2020 is slated for December 4-8 and will be a virtual event for...