The Rare Epilepsy Network (REN) is a consortium of partners committed to conducting research to improve outcomes of rare conditions associated with epilepsy and seizures. Together, we are committed to addressing the urgent health challenges of our rare epilepsy community by engaging patients and caregivers, making data available to researchers, and investigating causes and consequences in order to improve diagnosis, treatment and find cures.
Hope for HH is one of 10 founding partners. There are now more than 30.
During the AES, the REN organized a Strategic Planning Workshop to develop a REN research strategic plan and strategies for the next 1 to 5 years. Invited guests included all 30 rare epilepsy organizations, as well as the REN principal investigators Epilepsy Foundation, RTI International and Columbia University.
The REN Professional Advisory Board which is comprised of epilepsy thought leaders (including Dr. Jack Kerrigan from BNI) were also in attendance. Each organization was represented by an advocate and a researcher. Hope for HH President Ilene Miller and Dr. Varina Boerwinkle (London Symposium Attendee) represented Hope for HH.
Ilene Miller was invited to help kick off the meeting regarding why the REN is important to patients and their families.
Want to know what was discussed during the session? You can review the slides by clicking the link below.
Following, Dr. Dale Hesdorffer shared examples of current REN research including the propensity for pneumonia among rare epilepsy patients, which drugs show efficacy in which rare epilepsies; similar comorbidities for epilepsies that share disruptions on the mtor pathway; and other findings. Dr. Zachary Grinspan gave a presentation on the role of REN Ambassadors and how to recruit patients and increase enrollment in the REN. He also described a REN collaboration in NYC to identify patients from medical records that may have rare epilepsies who were not accurately diagnosed. And Gail Farfel (Zogenix) shared insights as to how the REN can collaborate with drug and device companies and the value of REN findings to these companies. She discussed at length the importance of the REN for identifying hypothesis as well as pockets of patients.
Call to Action: As patients and caregivers we observe many things unique to HH. For example, recently caregivers on the Hope for HH facebook page were discussing which kids had surgery and were seizure free and those whose seizures returned over time. When multiple parents observe those same things they suggest a pattern ripe for study by researchers. To answer these and other key questions, please sign up for the REN today (ren.rti.org)!