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Get to Know CRELD1 Warriors
An international movement to care for children with CRELD1.

REN
May 24, 20244 min read
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Get to Know CYFIP2 Network
Get to Know CYFIP2 Network and their community.

REN
May 17, 20242 min read
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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...

REN
Apr 24, 20242 min read
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Get to Know DYNC1H1 Association
About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...

REN
Apr 24, 20242 min read
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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...
meranelakel9
Mar 31, 20242 min read
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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...
meranelakel9
Nov 29, 20234 min read
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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...

REN
Feb 17, 20233 min read
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Get to Know Cure GABRB2
About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...

REN
Apr 22, 20222 min read
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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...

REN
Mar 24, 20222 min read
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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...

REN
Mar 15, 20222 min read
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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...

REN
Feb 14, 20222 min read
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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...

REN
Feb 9, 20222 min read
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Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)
Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)

REN
Nov 2, 20212 min read
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Get to Know NR2F1 Foundation
Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.

REN
Sep 17, 20212 min read
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Get to Know KIF1A.ORG
Learn about KIF1A.org and their advocacy.

REN
Oct 14, 20203 min read
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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....

REN
Oct 4, 20205 min read
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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...

REN
Oct 4, 20202 min read
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Looking for Data for Rare Epilepsies?
Attention Patients, Advocates & Researchers - Rare Epilepsy Data

REN
Jun 30, 20201 min read
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