Rare Epilepsy Network (REN) Expands Eligibility Criteria

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 with a rare epilepsy or by 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 help answer the research questions that are most important to people affected by a rare epilepsy.

The Epilepsy Foundation has now opened eligibility to any rare syndrome or disorder as long it is related to epilepsy or seizures in the majority of patients.

We have partnered with the following new organizations to help get the word out about these expanded eligibility criteria:

• Bridge the Gap SYNGAP
• Carson Harris Foundation
• Doose Syndrome Epilepsy Alliance
• Infantile Spasms Community
• International Rett Syndrome Foundation
• Jack Pribaz Foundation
• KCNQ2 Cure Alliance
• RASopathies Network
• Ring 14 USA Outreach
• Ring 20 Research & Support US
• TESS Foundation
• Wishes for Elliott

At present, more than 700 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, Karen Groff, a constituent of the Lennox-Gastaut Syndrome Foundation 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 here, and enroll in the registry here. 

Please join us in our mission to help all people affected by a rare epilepsy today!