Rare Epilepsy

REN

Aug 231 min read

Hot off the Presses - August 2024

Check out REN's latest newsletter here .

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Get to Know "Life" Association for Rare Diseases in Children

REN

Apr 242 min read

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...

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Get to Know ASXL Rare Research Endowment (ARRE) Foundation

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...

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Get to Know Lennox-Gastaut Syndrome Foundation

REN

Sep 12, 20223 min read

Get to Know Lennox-Gastaut Syndrome Foundation

Introducing Lennox-Gastaut Syndrome (LGS) Foundation

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Introducing the New REN Map (Where’s the Rare?)!

Justin Wan

Aug 4, 20222 min read

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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Things You Should Know About the Rare Epilepsies & Social Wellness

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...

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Epilepsy in Asian Americans and Pacific Islanders

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...

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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...

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Spotlighting Rare Epilepsies this Purple Day

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...

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Things You Should Know About the Rare Epilepsies and Sleep

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...

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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...

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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...

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Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)

REN

Nov 2, 20212 min read

Raising Awareness of Rare Epilepsies During National Epilepsy Awareness Month (NEAM)

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Mental Illness Awareness Week and the Rare Epilepsies - Oct. 3-9th

REN

Oct 13, 20212 min read

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 16, 20212 min read

Get to Know NR2F1 Foundation

Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.

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REN

Jul 30, 20213 min read

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, 20212 min read

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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What is an R13 Grant? Should You Apply for an R13 Grant?

REN

Jul 30, 20216 min read

What is an R13 Grant? Should You Apply for an R13 Grant?

Conferences, symposiums, and meetings for research, clinical and other health professionals are a great way to exchange information, set...

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Tips on Creating of Professional Advisory Board

REN

Jul 30, 20212 min read

Tips on Creating of Professional Advisory Board

This blog would not be possible without the helpful guidance from REN members Kari Rosbeck (TS Alliance), Jo Anne Nakagawa (TS Alliance),...

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Get to Know Lightning and Love Foundation

REN

Apr 23, 20213 min read

Get to Know Lightning and Love Foundation

About Recessive THAP12 Genetic Epilepsy Lightning and Love Foundation was created specifically to support Recessive THAP12 genetic...

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