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. 

 

 

RARES IN THE NEWS