Get Involved in the Rare Epilepsy Network (REN)

The Rare Epilepsy Network (REN), led by the Epilepsy Foundation, is a registry of medical and quality of life-related information provided by people affected by a rare epilepsy or their caregivers. The primary purpose of REN is to increase opportunities for those affected to participate in research that is “patient-centered.” This means that REN’s efforts answer the research questions that are most important to people affected by a rare epilepsy.

REN’s efforts to study a large number and wide variety of people affected by a rare epilepsy offer several potential advantages:

• Creates infrastructure to facilitate new observational studies and clinical trials
• Increases research efficiency, which means research will go from bench to bedside faster
• Enhances potential for increased quality and effectiveness of personalized medical care
• Identifies treatment effectiveness and its potential differences based on age, sex, ethnicity, and rare epilepsy syndrome, where little treatment information may currently exist

At present, more than 600 people affected by a rare epilepsy have registered for REN. Those who have participated report feeling a strong sense of empowerment and are enthusiastic about asking others to consider participating. In the video below, Lisa Soeby, co-founder of Hope for Hypothalamic Hamartomas and a caregiver of a child affected by a rare epilepsy, shares why she believes it is important for patients and caregivers affected by a rare epilepsy to register for REN.

With your help, we hope to find better prevention and treatment options for all people affected by a rare epilepsy. You can read more about REN at www.epilepsy.com/ren. Enroll in the registry at https://ren.rti.org/Enroll. 

Please join us and make your voice heard today!