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...

MANY CAUSES OF EPILEPSY ARE RARE Although epilepsy as a diagnosis is not rare, many causes of epilepsy are rare. When the underlying...

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.

Del 15 de Septiembre al 15 de Octubre, se celebra el Mes Nacional de la Herencia Hispana, un mes dedicado a celebrar la historia y los...

September 15 - October 15 celebrates National Hispanic Heritage Month - a month dedicated to celebrating the history and accomplishments...

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....

About Hao-Fountain Syndrome Hao-Fountain Syndrome is a haploinsufficient condition caused by variants in the USP7 gene, located on...

About CURE Epilepsy CURE Epilepsy’s purpose is to promote and fund research to find a cure for epilepsy - all epilepsies, whether they...

About Unverricht-Lundborg Disease (ULD) Unverricht-Lundborg Disease (ULD) is a rare genetic Progressive Myoclonic Epilepsy, also known as...