Empowering Collaboration: CureDRPLA’s Membership with the Rare Epilepsy Network

by | Jan 23, 2024 | News Articles

Rare Epilepsy Network (REN) was founded in 2013 and it welcomes epilepsy organizations to come together and collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy. Over the years, REN has grown into a volunteer network with over 100 member organizations. CureDRPLA joined REN in 2022 to stay up to date with the latest developments in epilepsy research.

Epilepsy is a prevalent symptom of DRPLA, particularly in individuals with juvenile-onset DRPLA. Managing epilepsy can be incredibly challenging, as finding the right combination of drugs proves elusive for some. In cases where seizures are not responsive to medication, the need for effective solutions becomes even more critical. CureDRPLA recognizes the complexity of this issue and joined REN in 2022 to educate their staff on epilepsy and better help the individuals and families that deal with epilepsy caused by DRPLA. Advances in the treatment of other epilepsies, like finding more effective and safer options, is something that we look forward to being a part of.

REN’s strength lies in its monthly meetings, where member organizations converge to discuss the latest research, clinical trials, and ongoing projects related to epilepsies. These gatherings provide an invaluable platform for sharing insights, fostering collaboration, and staying informed about emerging opportunities. REN volunteers attend the American Epilepsy Society (AES) Annual Meeting and organize a booth to showcase their work and the collective efforts of their member organizations. This platform not only promotes collaboration but also allows organizations like CureDRPLA to present their work to a broader audience. For the past two years, CureDRPLA has distributed its pamphlet at REN’s booth at the AES Annual Meeting.

As part of REN, CureDRPLA is enthusiastic about contributing to the collective effort aimed at advancing research and finding more effective and safer treatment options for epilepsy, across a spectrum of rare epilepsies.