Sign up to save your podcasts
Or
Share From Diagnosis to Advocacy: Inside the Rare Epilepsy Network (REN)
Share to email
Share to Facebook
Share to X
Share to email
Share to Facebook
Share to X
Or
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 registry effort and grew into a network of more than 170 rare epilepsy organizations. They discuss how REN supports families who receive a diagnosis with no existing support group, how organizations share research knowledge and best practices, and why registries and natural history studies are critical to accelerating both care and cure.
The episode also addresses a difficult but honest question: why does research feel so slow? Karen and Eileen speak candidly about the realities of scientific timelines, the transition from animal studies to human trials, and the complex risk decisions families are often asked to consider. They also highlight the growing role of precision medicine and the importance of pursuing a specific genetic diagnosis whenever possible.
The conversation closes with practical advice for newly diagnosed families and a reminder that rare does not mean small, and no one has to face this journey alone.
Topics covered include:
The origin and mission of the Rare Epilepsy Network
Connecting families when no diagnosis-specific group exists
Research collaboration across rare epilepsies
The role of registries and natural history studies
Global research trends and multidisciplinary care
Precision medicine in epilepsy
Advocacy, hope, and navigating uncertainty
Follow REN on their website: https://www.rareepilepsynetwork.org/
Follow KCNA2 on our website: https://www.kcna2epilepsy.org/
Medical note: This video is for education and support and is not medical advice.
Subscribe for more conversations focused on KCNA2 and other rare epilepsies, featuring families, clinicians, and researchers working to improve outcomes and expand access to care.
View all episodes
By kcna2epilepsyIn 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 registry effort and grew into a network of more than 170 rare epilepsy organizations. They discuss how REN supports families who receive a diagnosis with no existing support group, how organizations share research knowledge and best practices, and why registries and natural history studies are critical to accelerating both care and cure.
The episode also addresses a difficult but honest question: why does research feel so slow? Karen and Eileen speak candidly about the realities of scientific timelines, the transition from animal studies to human trials, and the complex risk decisions families are often asked to consider. They also highlight the growing role of precision medicine and the importance of pursuing a specific genetic diagnosis whenever possible.
The conversation closes with practical advice for newly diagnosed families and a reminder that rare does not mean small, and no one has to face this journey alone.
Topics covered include:
The origin and mission of the Rare Epilepsy Network
Connecting families when no diagnosis-specific group exists
Research collaboration across rare epilepsies
The role of registries and natural history studies
Global research trends and multidisciplinary care
Precision medicine in epilepsy
Advocacy, hope, and navigating uncertainty
Follow REN on their website: https://www.rareepilepsynetwork.org/
Follow KCNA2 on our website: https://www.kcna2epilepsy.org/
Medical note: This video is for education and support and is not medical advice.
Subscribe for more conversations focused on KCNA2 and other rare epilepsies, featuring families, clinicians, and researchers working to improve outcomes and expand access to care.