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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REN
- Sep 12, 2022
- 3 min
Get to Know Lennox-Gastaut Syndrome Foundation
Introducing Lennox-Gastaut Syndrome (LGS) Foundation
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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
- Sep 16, 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
- 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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REN
- Jul 30, 2021
- 6 min
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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REN
- Jul 30, 2021
- 2 min
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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REN
- Apr 23, 2021
- 3 min
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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REN
- Mar 26, 2021
- 6 min
Get to Know Project 8p Foundation
About Project 8p Foundation Chromosome 8p is a rare genetic condition with approximately 350 patients around the world and counting....
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REN
- Mar 26, 2021
- 2 min
Get to Know Foundation for Hao-Fountain Syndrome USP7 Gene
About Hao-Fountain Syndrome Hao-Fountain Syndrome is a haploinsufficient condition caused by variants in the USP7 gene, located on...
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REN
- Mar 14, 2021
- 5 min
Get to Know Hope for ULD
About Unverricht-Lundborg Disease (ULD) Unverricht-Lundborg Disease (ULD) is a rare genetic Progressive Myoclonic Epilepsy, also known as...
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REN
- Mar 5, 2021
- 3 min
Get to Know FOXG1 Research Foundation
About FOXG1 Syndrome FOXG1 syndrome is a haploinsufficient condition caused by variants in the FOXG1 gene, located on 14q12. As of March...
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REN
- Feb 12, 2021
- 2 min
Get to Know Coalition to Cure CHD2
Get to Know Coalition to Cure CHD2 Updated: Feb 11 About CHD2-related neurodevelopmental disorders We currently have about 205 diagnosed...
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