Resources
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for
DATA SEEKERS
GET DATA
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Visit REN registry: 1459 patients across 40 rare epilepsy diagnoses.
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Read Rare Epilepsy Landscape Analysis & Appendix overviewing challenges and opportunities for 44 rare epilepsy organizations.
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​Visit REN members'
websites to learn more about individual disease registries, research, and other resources.
for
RESEARCHERS
FIND GRANTS & FUNDING
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Visit our members' websites to find grants.
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Visit Epilepsy Research Connection (ERC) to find grants across organizations.
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Visit ICARE to see historical funding across government and patient organizations.
for
RARE ORGS
JOIN REN
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Become a Member and join our list-serve to stay abreast of information, meetings and news.
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Get tools to start a Rare Epilepsy Org.
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Meet REN collaborators.
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for
PARENTS
GET INFO & SUPPORT
Visit our members' websites for info, support and community.
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Contact Epilepsy Foundation's 24/7 Helpline.
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Find clinical trials.
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Contact REN with new diagnosis.
Rare RounDUP NEWSLETTER
RARES IN THE NEWS
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Raring for Change, Epilepsy & Behavior (Aug. 2020)
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Factors Associated with Caregiver Sleep, J. of Pediatrics (Spring 2020)
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Comorbidities of Rare Epilepsies, Journal of Pediatrics (Dec. 2018)
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Common terms for rare epilepsies, Epilepsia Open (Dec. 2017)
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The Epilepsy Foundation leads in the Rare Epilepsy Network PCORI Award, Epilepsy & Behavior (Oct. 2014)
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Facilitating the Early Diagnosis and Equitable Delivery of Gene Targeted Therapies to Individuals with Rare Disease, Request for Informations (July 2021)