Resources
for
DATA SEEKERS
GET DATA
Visit REN registry: 1459 patients across 40 rare epilepsy diagnoses.
Read Rare Epilepsy Landscape Analysis & Appendix overviewing challenges and opportunities for 44 rare epilepsy organizations.
Visit REN members'
websites to learn more about individual disease registries, research, and other resources.
for
RESEARCHERS
FIND GRANTS & FUNDING
Visit our members' websites to find grants.
Visit Epilepsy Research Connection (ERC) to find grants across organizations.
Visit ICARE to see historical funding across government and patient organizations.
for
RARE ORGS
JOIN REN
Become a Member and join our list-serve to stay abreast of information, meetings and news.
Get tools to start a Rare Epilepsy Org.
Meet REN collaborators.
for
PARENTS
GET INFO & SUPPORT
Visit our members' websites for info, support and community.
Contact Epilepsy Foundation's 24/7 Helpline.
Find clinical trials.
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)