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Get to Know FAST (Foundation for Angelman Syndrome Therapeutics)
About Angelman syndrome (AS) Angelman syndrome (AS) is a rare neurogenetic disorder that affects about one in 15,000 people, or...
Zaynab Ahmed
Mar 65 min read
12 views
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Their Own Words - LCC Foundation
Meet LCC Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members and Partners...
REN
Nov 26, 20241 min read
40 views
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Get to Know The LCC Foundation
Learn about About LCC/Labrune syndrome
REN
Oct 16, 20246 min read
39 views
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In Their Own Words - PAME
Meet Partners Against Mortality in Epilepsy (PAME) and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing...
REN
Aug 23, 20241 min read
26 views
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Get to Know CRELD1 Warriors
An international movement to care for children with CRELD1.
REN
May 24, 20244 min read
701 views
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Get to Know CYFIP2 Network
Get to Know CYFIP2 Network and their community.
REN
May 17, 20242 min read
161 views
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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...
REN
Apr 24, 20242 min read
101 views
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Get to Know DYNC1H1 Association
About DYNC1H1 Associated Neurological Disorders DYNC1H1 Associated Neurological Disorder (DAND) encompasses a recently identified group...
REN
Apr 24, 20242 min read
137 views
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Get to Know The Rory Belle Foundation
About NARS1 Disorder The first pathogenic variants for NARS1(asparaginyl-tRNA synthetase 1) disorder were reported in 2020. The NARS1...
meranelakel9
Mar 31, 20242 min read
66 views
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Get to Know the Pediatric Epilepsy Surgery Alliance
About Pediatric Epilepsy Surgery: Surgery is the least utilized treatment in all of epilepsy. Many different surgeries can stop or reduce...
meranelakel9
Mar 19, 20244 min read
416 views
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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...
meranelakel9
Jan 16, 20242 min read
124 views
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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...
meranelakel9
Nov 29, 20234 min read
64 views
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Get to Know Pediatric Epilepsy Research Consortium (PERC)
About PERC The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and...
REN
Feb 17, 20233 min read
275 views
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Get to Know Lennox-Gastaut Syndrome Foundation
Introducing Lennox-Gastaut Syndrome (LGS) Foundation
REN
Sep 12, 20223 min read
185 views
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Get to Know Cure GABRB2
About GABRB2 GABRB2 epilepsy has a range of phenotypes from febrile seizures to severe developmental disabilities, epileptic...
REN
Apr 22, 20222 min read
319 views
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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...
REN
Mar 22, 20225 min read
1,088 views
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Get to Know NR2F1 Foundation
Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) was discovered in late 2013.
REN
Sep 17, 20212 min read
463 views
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Get to Know Lightning and Love Foundation
About Recessive THAP12 Genetic Epilepsy Lightning and Love Foundation was created specifically to support Recessive THAP12 genetic...
REN
Apr 23, 20213 min read
324 views
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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....
REN
Mar 26, 20216 min read
126 views
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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...
REN
Mar 26, 20212 min read
1,913 views
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