top of page
.png)
meranelakel9
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...
48 views0 comments
meranelakel9
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
meranelakel9
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...
59 views0 comments
Justin Wan
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
REN
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
REN
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...
304 views0 comments
REN
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...
42 views0 comments
REN
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...
94 views0 comments
REN
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...
98 views0 comments
REN
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...
126 views0 comments
REN
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...
128 views0 comments
REN
Nov 2, 20212 min read
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
132 views0 comments
REN
Nov 25, 20203 min read
Get to Know Tbc1d24 Mutation Foundation
About Tbc1d24 Mutation Our rare epilepsy is caused by a mutation in the Tbc1d24 gene. For a person to be affected with this disorder, two...
841 views0 comments
REN
Nov 20, 20202 min read
Tips to Navigate AES
The annual American Epilepsy Society is just around the corner. AES2020 is slated for December 4-8 and will be a virtual event for...
64 views0 comments
REN
Nov 20, 20203 min read
Get to Know STXBP1 Foundation
About STXBP1 Disorder STXBP1 Disorder is a rare developmental epileptic encephalopathy caused by mutations in the STXBP1 gene. The STXBP1...
300 views0 comments
bottom of page