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REN is comprised of mature organizations as well as those newly formed. We are frequently asked for resources for starting a new rare epilepsy organization. There are many resources for starting a nonprofit. We have listed a few below to help.
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REN
Registry
The REN (Rare Epilepsy Network) registry is a comprehensive database that collects and organizes detailed information about patients with rare epilepsy. It includes data on over 1,459 patients across 40 different rare epilepsy disorders.
The registry captures a wide range of valuable information, including comorbidities, developmental milestones, seizure medications, side effects, seizure history, and more. This resource is used by researchers, clinicians, and other stakeholders to advance understanding, treatment, and care for individuals with rare epilepsy conditions.
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To access this data, visit the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) portal. Support is available to help you navigate and utilize the REN data effectively. In addition to the REN data, the RDCA-DAP portal also includes contains data for over 34 diseases, including several that are primarily or include rare epilepsy: Angelman Syndrome, CACNA1A, hnRNP, KIF1A, Kleefstra, LGS, Prader-Willi, Sturge-Weber, and Tuberous Sclerosis.
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RDCA-DAP Portal Homepage
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If your organization is interested in contributing data to RDCA-DAP, you can complete this form. By contributing, you can help enhance the platform's value for the entire rare epilepsy research community, facilitating advancements in treatment and care for those affected by these conditions.
The REN registry has resulted in 3 publications: Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network,
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Also, you can explore the original interactive dashboard to visualize and analyze data from the registry. This tool allows you to delve into detailed patient information across various rare epilepsy conditions.
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