Rare Epilepsy Network (REN) is a volunteer network that connects rare epilepsy organizations and broad epilepsy stakeholders to work together to improve the lives lived of our individual constituents. They work to promote and enable successful patient-centered outcomes research, enable successful clinical trials in the rare epilepsies, and increase representation of the rare epilepsies in funding, research, advocacy and drug development, across a wide range of public and private health organizations.
Epilepsy is the 4th most common neurological disease and has been diagnosed in 65 million people worldwide. Though seizures are a less common symptom within our patient population (9% as of December 2023 via Simons Searchlight‘s CTNNB1 Registry), epilepsy is a disorder that is important to bring awareness to within our community and the wider rare disease community. We are excited to join the other REN organizations in learning from one another.