Rare Epilepsy: Collaborating for Advocacy, Research, and Community

This week on Seizing Life ®, Yssa DeWoody of Ring14 USA and the Rare Epilepsy Network (REN) joins us to provide a primer on rare epilepsies. Yssa explains what rare epilepsies are and how they are diagnosed, potential treatments, and the particular challenges for those impacted. Yssa also recommends resources including organizations, support groups, and clinical trials within the rare epilepsy community.

Yssa DeWoody is the Co-Founder and Research Director of Ring14 USA, an organization dedicated to providing a supportive community for families impacted by a rare epilepsy diagnosis and to help those diagnosed live their best life by finding targeted treatments and therapies. Like many in the rare epilepsy community, Yssa has a personal connection; her youngest daughter lives with Ring14 Syndrome. In 2011, Yssa co-founded Ring14 USA with four other mothers and has served as President/Director since 2013. Ring14 USA is a member of the Rare Epilepsy Network, a collaborative network of rare epilepsy groups with the shared goal of fostering patient-focused research and advocacy.

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