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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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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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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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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REN
Mar 26, 20216 min read
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, 20212 min read
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, 20213 min read
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, 20215 min read
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, 20213 min read
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, 20212 min read
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, 20202 min read
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, 20204 min read
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, 20202 min read
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, 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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REN
Nov 25, 20201 min read
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, 20204 min read
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, 20202 min read
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, 20203 min read
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, 20204 min read
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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