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...
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REN
- Feb 17
- 3 min
Get to Know Pediatric Epilepsy Research Consortium (PERC)
About PERC The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and...
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REN
- Apr 22, 2022
- 2 min
Get to Know Cure GABRB2
About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...
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REN
- Mar 24, 2022
- 2 min
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...
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REN
- Mar 15, 2022
- 2 min
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...
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REN
- Feb 14, 2022
- 2 min
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...
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REN
- Feb 9, 2022
- 2 min
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...
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REN
- Nov 2, 2021
- 2 min
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
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REN
- Sep 16, 2021
- 2 min
Get to Know NR2F1 Foundation
Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.
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REN
- Oct 13, 2020
- 3 min
Get to Know KIF1A.ORG
Learn about KIF1A.org and their advocacy.
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REN
- Oct 4, 2020
- 5 min
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....
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REN
- Oct 3, 2020
- 2 min
Get To Know the Angelman Syndrome Foundation
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...
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REN
- Jun 30, 2020
- 1 min
Looking for Data for Rare Epilepsies?
Attention Patients, Advocates & Researchers - Rare Epilepsy Data
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