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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Rare Epilepsy Network

Rare epilepsies collaborating. 

Get REN Updates.  Join Google Groups.

 

Sign up here

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