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
- Sep 12, 2022
- 3 min
Get to Know Lennox-Gastaut Syndrome Foundation
Introducing Lennox-Gastaut Syndrome (LGS) Foundation
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Deven Parasnis
- Sep 6, 2022
- 2 min
Screening for Epilepsy in Newborns is Beneficial
This September marks the annual Newborn Screening Awareness Month. This month is dedicated to celebrating and raising awareness for...
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Justin Wan
- Aug 4, 2022
- 2 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, 2022
- 2 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, 2022
- 2 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, 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 22, 2022
- 5 min
Get to Know Jordan's Guardian Angels
About Jordan's Syndrome (JS) or PPP2R5D-Related Neurodevelopmental Disorder Jordan’s Syndrome is a neurodevelopmental disorder caused by...
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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
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
- 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
- Oct 13, 2021
- 2 min
Mental Illness Awareness Week and the Rare Epilepsies - Oct. 3-9th
REN acknowledges that other organizations recognize differences between “mental health conditions” versus “mental illnesses” as a...
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REN
- Sep 17, 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
- Sep 15, 2021
- 3 min
Recursos en Español para epilepsias raras, celebrando el Mes de la Herencia Hispana (9/ 15-10/15)
Del 15 de Septiembre al 15 de Octubre, se celebra el Mes Nacional de la Herencia Hispana, un mes dedicado a celebrar la historia y los...
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REN
- Sep 7, 2021
- 3 min
Spanish Language Resources for Rare Epilepsies, Celebrating Hispanic Heritage Month (9/ 15-10/15)
September 15 - October 15 celebrates National Hispanic Heritage Month - a month dedicated to celebrating the history and accomplishments...
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REN
- Jul 30, 2021
- 3 min
Sibling Support and Resources
A special thanks to Alycia Halladay (Autism Science Foundation), Betsy Pilon (Hope for HIE), Brandy Fureman (Epilepsy Foundation),...
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REN
- Jul 30, 2021
- 2 min
Tips on Finding Interns
Several REN MEMBERS have inquired how to find interns. Advice from our Members follows below. Thanks in advance to Kari Rosbeck (TS...
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