Epilepsy Foundation

Mar 312 min read

Get to Know The Rory Belle Foundation

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

51 views0 comments

Mar 194 min read

Get to Know the Pediatric Epilepsy Surgery Alliance

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

414 views0 comments

Jan 162 min read

Get to Know CTNNB1 Connect and Cure (CCC)

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

104 views0 comments

Nov 29, 20234 min read

Get to Know ASXL Rare Research Endowment (ARRE) Foundation

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

62 views0 comments

Aug 4, 20222 min read

Introducing the New REN Map (Where’s the Rare?)!

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

137 views0 comments

Jul 21, 20222 min read

Things You Should Know About the Rare Epilepsies & Social Wellness

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

44 views0 comments

Feb 9, 20222 min read

Black Americans and Rare Epilepsies

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

129 views0 comments

Aug 26, 20202 min read

Get To Know Kathleen Farrell, MB BCh, BAO

What is Your Role I am the Senior Director of the Epilepsy Learning Healthcare System (ELHS) as part of the National Office team of the...

98 views0 comments

Jun 30, 20201 min read

Looking for Data for Rare Epilepsies?

Attention Patients, Advocates & Researchers - Rare Epilepsy Data

62 views0 comments