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In Their Own Words - FAST
Meet FAST Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members and...
Zaynab Ahmed
Apr 41 min read
4 views
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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
20 views
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In Their Own Words - KdVS Foundation
Meet KdVS Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members and...
Zaynab Ahmed
Feb 211 min read
17 views
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REN's 2024-2025 Interns
REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and...

REN
Jan 231 min read
46 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
43 views
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In Their Own Words - Dravet Syndrome Foundation Spain
Meet Dravet Syndrome Foundation Spain and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many...

REN
Nov 22, 20241 min read
36 views
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In Their Own Words - Child Neurology Foundation (CNF)
Meet Child Neurology Foundation and it's dedicated Leaders We are thrilled to announce a new VIDEO series introducing REN's many Members...

REN
Nov 22, 20241 min read
16 views
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Get to Know The LCC Foundation
Learn about About LCC/Labrune syndrome

REN
Oct 16, 20246 min read
40 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
27 views
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In Their Own Words - PERC
Meet Pediatric Epilepsy Research Consortium (PERC) with Jane McCabe We are thrilled to announce a new VIDEO series introducing REN's many...

REN
Aug 22, 20241 min read
28 views
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In Their Own Words - LGS
Another video from REN Member LGS - in their own words. Thanks Jennifer!

REN
Jul 31, 20241 min read
20 views
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In Their Own Words
Learn about ASXL Rare Research Endowment Foundation and ASXL-related disorders

REN
Jul 11, 20241 min read
29 views
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In Their Own Words
Meet CURE GRIN with Meagan Hutchinson We are thrilled to announce a new VIDEO series introducing REN's many Members and Partners in their...

REN
Jul 11, 20241 min read
24 views
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In Their Own Words
Listen as Co-Founder Adam Clatworthy shares information about CRELD1 Warriors

REN
Jul 11, 20241 min read
109 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
726 views
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Get to Know CYFIP2 Network
Get to Know CYFIP2 Network and their community.

REN
May 17, 20242 min read
169 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
103 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
140 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
70 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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