Rare Epilepsy Network

REN

Oct 151 min read

Hot off the Presses - Sept2024

September News is out!

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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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REN

Apr 242 min read

Get to Know DYNC1H1 Association

About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...

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Get to Know CTNNB1 Connect and Cure (CCC)

meranelakel9

Jan 162 min read

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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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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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

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, 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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REN

Nov 25, 20203 min read

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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Get To Know Kathleen Farrell, MB BCh, BAO

REN

Aug 26, 20202 min read

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 read

Looking for Data for Rare Epilepsies?

Attention Patients, Advocates & Researchers - Rare Epilepsy Data

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