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.
Other
Projects
What additional projects would you prioritize?