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Ryan Brown

To enroll, please visit the Rare Epilepsy Network.

You Are Not Alone

Boy and mother on swingHave 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

Boy playing music

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 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 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 began in October 2014. To enroll, please visit the Rare Epilepsy Network.

Want More Information?A boy with his dog

Are you a researcher?
Have a rare epilepsy not on the list?

Looking for more information? Please provide your name and contact information for additional information. You may also contact Epilepsy Foundation at:
Phone: 888-886-3745 
Email: ren@efa.org

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ENROLL HERE

To enroll, please visit the Rare Epilepsy Network.

Aaron's Ohtahara Foundation

Aaron's Ohtahara Foundation is a non-profit organization that provides hope to families impacted by Ohtahara Syndrome, a rare form of pediatric epilepsy.  The foundation strives to do this through their three objectives: Research, Awareness, and Family Support. Incorporated in 2010, Aaron's Ohtahara Foundation is dedicated to helping children diagnosed with Ohtahara Syndrome. We Are Not Without Hope.

Aicardi Syndrome

Aicardi Syndrome Foundation is a non-profit organization whose mission is to better the quality of life for children affected with AS through awareness and research.

ASF was incorporated in 1991 and is staffed by volunteers. ASF is funded entirely by private donations and various fundraising events. Since 1991, ASF has provided the ground work for the Aicardi Syndrome web site which links families worldwide, sponsored the biennial AS Family conference which gives a unique opportunity for families to learn about AS and how to care for an affected child through workshops/seminars and discussions with parents and professionals, awarded annual grants for ongoing research of AS, and hosted the first symposium for researchers and scientists to collaborate on identifying the AS gene.

www.aicardisyndromefoundation.org

CDKL5 Disorder

International Foundation for CDKL5 Research is an all-volunteer organization founded by dedicated parents of children affected by CDKL5 disorder, a rare and devastating epileptic encephalopathy that begins in the first weeks of life.

IFCR is dedicated to funding global research, raising awareness and supporting families.  We search out the most promising science and we have formed strong collaborations between researchers and clinicians.  IFCR has founded three CDKL5 Centers of Excellence  to ensure our families have access to experienced and dedicated clinicians.    To learn more about CDKL5 and the International Foundation for CDKL5

www.cdkl5.com.

Dravet Syndrome

Dravet Syndrome Foundation is a non-profit organization, whose mission is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

www.dravetfoundation.org

Dup15q Syndrome

Dup15q Alliance is a nonprofit corporation founded under the name of IsoDicentric 15 Exchange, Advocacy and Support in 1994 by a mother and a genetic counselor with 13 families raising children with chromosome 15q duplications.

It started as support group and in 2004 it was officially incorporated into a nonprofit organization. In 2011 the organization's name was changed to Dup15q Alliance to encompass the variations of the disorder known as chromosome 15q duplication syndrome. Today, there are over 800 families from around the world affiliated with Dup15q Alliance. The organization is a volunteer run organization supported by grants, donations and many hours of volunteer effort.  

www.dup15q.org

Hypothalamic Hamartoma

Providing information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and promoting research toward early detection, improved treatments, living with HH, and cure.

http://hopeforhh.org/

Lennox-Gastaut Syndrome

The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and programs for individuals living with LGS and their families.

www.lgsfoundation.org

PCDH19 Female Epilepsy

The PCDH19 Alliance was started by parents of girls affected by PCDH19 Related Epilepsy in an effort to support ongoing research into this debilitating disorder. The PCDH19 Alliance is 100% volunteer run.

Our mission is to improve the lives of children and families who are affected by PCDH19 Related Epilepsy. The Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure; providing information and support to affected families; and assisting the efforts of the medical community, so that no family suffers without a diagnosis and the most appropriate medical treatment.

www.pcdh19info.org

Phelan-McDermid Syndrome

Phelan McDermid Syndrome Foundation provides support to families affected by Phelan-McDermid Syndrome through our website, quarterly newsletter, Facebook groups, Twitter, regional gatherings, and our biennial family conference.

Our research support initiatives include a web-based patient registry and data network, grants and fellowships, scientific symposia, and connecting patients with opportunities to participate in clinical research and trials.

www.22q13.org

Tuberous Sclerosis Complex

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a rare genetic disorder that causes tumors to form on vital organs and is the leading genetic cause of epilepsy and autism.

www.tsalliance.org

Epilepsy Foundation

Epilepsy Foundation

The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.

www.epilepsy.com

 

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