Latest / The KCNA2 & Rare Epilepsy’s Podcast
From Diagnosis to Advocacy: Inside the Rare Epilepsy Network (REN)
In this episode, Nancy speaks with leaders from the Rare Epilepsy Network (REN) about what it truly takes to move rare epilepsy research forward.
She is joined by Eileen Miller, Director of REN and longtime parent advocate, and Karen Utley, Chair of REN’s Coordinating Committee and President and Co-Founder of the International Foundation for CDKL5 Research. Karen’s daughter, Samantha, who lives with CDKL5 deficiency disorder, is also part of the conversation, offering a real-life reminder of the daily medical complexity families manage.
Together, they explain how REN began as a collaborative…
The skinny
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