Get to Know The Rory Belle Foundation
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About NARS1 Disorder The first pathogenic variants for NARS1(asparaginyl-tRNA synthetase 1) disorder were reported in 2020. The NARS1...
meranelakel9
Jan 162 min
Get to Know CTNNB1 Connect and Cure (CCC)
About CTNNB1 syndrome CTNNB1 syndrome is a rare neurodevelopmental disorder caused by variants in the CTNNB1 gene, located at 3p21. As of...
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meranelakel9
Nov 29, 20234 min
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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Justin Wan
Aug 4, 20222 min
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...
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Justin Wan
Jul 21, 20222 min
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...
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REN
May 24, 20222 min
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...
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REN
Apr 22, 20222 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, 20222 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, 20222 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, 20222 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, 20222 min
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...
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REN
Nov 2, 20212 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
Dec 7, 20202 min
Finding & Creating a Rare Epilepsy Community
Diagnosed with a new rare epilepsy and looking for community? Tips follow from the Rare Epilepsy Network (REN) leaders. Do a google and...
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REN
Nov 25, 20203 min
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...
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REN
Oct 16, 20203 min
Get to Know PMG Awareness Organization
Get to know Polymicrogyria (PMG) & The PMG Awareness Organization
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REN
Aug 26, 20202 min
Get To Know Kathleen Farrell, MB BCh, BAO
What is Your Role I am the Senior Director of the Epilepsy Learning Healthcare System (ELHS) as part of the National Office team of the...
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REN
Jun 30, 20201 min
Looking for Data for Rare Epilepsies?
Attention Patients, Advocates & Researchers - Rare Epilepsy Data
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