rare developmental epileptic encephalopathy

Apr 242 min read

Get to Know "Life" Association for Rare Diseases in Children

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

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...

Mar 24, 20222 min read

Spotlighting Rare Epilepsies this Purple Day

Purple Day takes place annually on March 26 as an international effort to spread awareness and resources about epilepsy. It’s a...

Mar 15, 20222 min read

Things You Should Know About the Rare Epilepsies and Sleep

March 13-19 marks Sleep Awareness Week 2022! Sleep Awareness Week celebrates and encourages healthy sleep. For those touched by the rare...

Feb 14, 20222 min read

International Epilepsy Day 2022

Celebrate International Epilepsy Day & The Rare Epilepsies on February 14! Celebrated on the second Monday in February and founded by The...

Sep 16, 20212 min read

Get to Know NR2F1 Foundation

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

Oct 4, 20205 min read

Get To Know The International Foundation for CDKL5 Research

About CDKL5 CDKL5 deficiency disorder (CDD) is a rare developmental epileptic encephalopathy (DEE) caused by mutations in the CDKL5 gene....

Aug 26, 20205 min read

Get To Know The Cute Syndrome Foundation (SCN8A Epilepsy)

About SCN8A SCN8A Epilepsy is a rare developmental epileptic encephalopathy associated with mutations in the gene SCN8A. The first known...

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