rare disease

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...

88 views0 comments

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

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

May 24, 20222 min read

Epilepsy in Asian Americans and Pacific Islanders

This May celebrates Asian American and Pacific Islander Heritage Month. This month is dedicated to celebrating the contributions Asian...

131 views0 comments

Apr 22, 20222 min read

Get to Know Cure GABRB2

About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...

310 views0 comments

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...

43 views0 comments

Feb 9, 20222 min read

Rare Disease & Rare Epilepsies

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

129 views0 comments