Executive Director, Vanessa Vogel-Falrley, attended the Rare Epilepsy Network meeting that was held at AES November 30th-December 5th. To expedite research into the rare epilepsies, 26 rare epilepsy organizations have joined forces with the Epilepsy Foundation, Research Triangle Institute, and Columbia University to create theRare Epilepsy Network (REN).
With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN patient registry collected information about people living with rare epilepsies to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them. At the meeting data analysis and findings were reviewed and future publication plans were discussed. The need to look more deeply at quality of life for patients and caregivers was identified as very interesting point of investigation in the upcoming year.