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

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

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...

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...

Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)

REN acknowledges that other organizations recognize differences between “mental health conditions” versus “mental illnesses” as a...

Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.

A special thanks to Alycia Halladay (Autism Science Foundation), Betsy Pilon (Hope for HIE), Brandy Fureman (Epilepsy Foundation),...

Several REN MEMBERS have inquired how to find interns. Advice from our Members follows below. Thanks in advance to Kari Rosbeck (TS...

Conferences, symposiums, and meetings for research, clinical and other health professionals are a great way to exchange information, set...

This blog would not be possible without the helpful guidance from REN members Kari Rosbeck (TS Alliance), Jo Anne Nakagawa (TS Alliance),...

About Recessive THAP12 Genetic Epilepsy Lightning and Love Foundation was created specifically to support Recessive THAP12 genetic...

About Project 8p Foundation Chromosome 8p is a rare genetic condition with approximately 350 patients around the world and counting....