You Are Not Alone
Have you or a loved one been diagnosed with a rare epilepsy? You can register for REN if you have been diagnosed with a rare epilepsy disorder or syndrome as long as it is related to epilepsy or seizures in the majority of people.
To be eligible, the following criteria must also be met: A person that has had at least one seizure in their lifetime that was not caused by a fever or the direct result of a head injury. We call these types of seizures “unprovoked.” A person that is at least 18 years old and can consent for themselves OR a person of any age that is not a ward of the State and has a parent or legal guardian that can consent on their behalf.
You are not alone. Of the 65 million people living with epilepsy worldwide, a significant amount has a rare form of epilepsy.
Though each syndrome/disease/condition is different, people living with rare epilepsies and caregivers share many common seizures, symptoms and side effects. However, because each syndrome population is small in size, research to unlock answers is not moving fast enough.
Rare Epilepsies Unite
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 the first ever Rare Epilepsy Network (REN). With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN is building a patient registry to collect 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. A registry gathers and keeps information about people with a certain condition to support and encourage research into that condition. The information people provide is stored in a secure database; information is given to researchers without names or identifying information of participants.
Are You Living with a Rare Epilepsy? Join REN Today!
If you or your loved one has been diagnosed with a rare epilepsy, we urge you to enroll in the REN today. Your participation may:
- Help researchers understand your rare epilepsy
- Help researchers identify individuals at risk
- Help others obtain an early diagnosis and avoid delayed or misdiagnosis
- Find better treatments for your rare epilepsy
- Unlock the cause and lead to the cure for your rare epilepsy
- Improve the quality of care for people living with your rare epilepsy
The more people that join the REN, the more information we will have about each rare epilepsy and the faster epilepsy researchers will be able to understand their cause, improve treatments and develop cures!
What Will You Need To Do?
Registry enrollment is simple. You or your caregiver will be asked to fill out a Registry Questionnaire – it’s just like giving a history of your epilepsy at the doctor’s office. Periodically, you may be asked to update your information.
How Do You Join?
Enrollment began in October 2014. To enroll, please visit the Rare Epilepsy Network.
Want More Information?
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Have a rare epilepsy not on the list?