Meet Partners Against Mortality in Epilepsy (PAME) and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing...

Learn about ASXL Rare Research Endowment Foundation and ASXL-related disorders

Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors

An international movement to care for children with CRELD1.

Get to Know CYFIP2 Network and their community.

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

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

About PERC The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and...

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)

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

Learn about KIF1A.org and their advocacy.

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

About Angelman Syndrome (AS) Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births or 500,000...