You Are Not Alone
Have you or a loved one been diagnosed with a rare epilepsy including: Aicardi Syndrome, CDKL5 Disorder, Dravet Syndrome, Dup15q Syndrome, Hypothalamic Hamartoma, Lennox-Gastaut Syndrome, Ohtahara Syndrome, PCDH19 Female Epilepsy, Phelan-McDermid Syndrome or Tuberous Sclerosis Complex?
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, patients and caregivers with rare epilepsies 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, ten rare epilepsy foundations have joined forces with the Epilepsy Foundation, Research Triangle Institute, Columbia University and New York 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 rare epilepsy patients to better understand these conditions, improve treatments, and improve the lives and quality of care of patients 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 Us 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 patients 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 is expected to begin 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?