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 18, 2021
- 3 min
Get to Know CURE Epilepsy
About CURE Epilepsy CURE Epilepsy’s purpose is to promote and fund research to find a cure for epilepsy - all epilepsies, whether they...
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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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REN
- Dec 18, 2020
- 2 min
Get to Know SLC6A1 Connect
About SLC6A1-Related Disorders SLC6A1-related disorders are emerging as a common cause of developmental and epileptic encephalopathies,...
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REN
- Dec 18, 2020
- 4 min
Get to Know CFC International
About Cardio-Facio-Cutaneous (CFC) Syndrome CFC Syndrome is a rare genetic disorder that affects about 800 individuals worldwide. While...
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REN
- Dec 7, 2020
- 2 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, 2020
- 3 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
- Nov 25, 2020
- 1 min
Add Your Research Grants to ERC
The Epilepsy Research Connection (ERC) is a repository of epilepsy research funding opportunities from non-profit and government...
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REN
- Nov 25, 2020
- 4 min
Get to Know Fundación Libellas
About NALCN NALCN is involved in ultra-rare and severe genetic diseases that begins in infancy. The sodium leak channel NALCN is a highly...
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REN
- Nov 20, 2020
- 2 min
Tips to Navigate AES
The annual American Epilepsy Society is just around the corner. AES2020 is slated for December 4-8 and will be a virtual event for...
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REN
- Nov 20, 2020
- 3 min
Get to Know STXBP1 Foundation
About STXBP1 Disorder STXBP1 Disorder is a rare developmental epileptic encephalopathy caused by mutations in the STXBP1 gene. The STXBP1...
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REN
- Nov 17, 2020
- 4 min
Get to Know Dravet Syndrome Foundation Spain (FSD)
About Dravet Syndrome Dravet Syndrome (DS) is a rare, severe and disabling developmental and epileptic encephalopathy of genetic origin,...
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