Projects

Data

Sharing

Analyze and promote usage of REN registry data.

Quality

of Life

Develop Quality of Life (QOL) measures that are specific to Rare epilepsies.

Improving Patient Outcomes

Increase Rare patient

participation in initiatives to improve patient outcomes. 

Policy and Advocacy

Respond to RFI's to promote the unique perspective of Rare epilepsies. 

Adulthood and Transitions

Develop transition 
resources for adults.

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Other

Projects

What additional projects would you prioritize?

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