Welcome to the Rare Epilepsy Network (REN).

Thank you for your interest in the Rare Epilepsy Network (REN). The mission of the REN is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.

REN is a network of rare organization leaders. This list-serve is reserved exclusively for leaders of rare epilepsy organizations. By accepting this invite, you agree to REN's community guidelines: https://www.rareepilepsynetwork.org/copy-of-terms-of-engagement-1

Please visit our webpage at rareepilepsynetwork.org to learn more about REN's history, terms of engagement, and members and partners, as well as instructions if your ORGANIZATION or SUPPORT GROUP is interested in signing up to become a REN member or partner. Also check out our Resource page for tools available for researchers, industry, academics, government, patient advocacy groups (PAGs) and even individuals and communities looking to start/found a rare epilepsy organization here.

For patients seeking information, community and support, we direct you to our members page to find an organization that addresses your diagnosis. Contact info@rareepilepsynetwork.org if your diagnosis is not addressed by one of our members.

To join the REN GOOGLE GROUPS, follows steps 1-2 below. For additional information, contact info@rareepilepsynetwork.org.

Sign up for the REN GOOGLE GROUP here to receive announcements and other information. Only organization/support group leaders will be approved for this list serve. When signing up please use your full first and last name eg., Jane Doe.
Complete the REN sign up here where you will identify your primary and alternate REN contacts, as well indicate your interest in serving working groups are of interest.
REN Membership calls are typically scheduled for the last Monday of each month from 2-3 PM EST. However, some months full membership calls may be replaced by calls focused on specific projects.

Questions may be sent to info@rareepilepsynetwork.org

REN-Rare Epilepsy Network

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