Rare Epilepsies (2014)


Originally Presented on Thursday, November 6, 2014

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? If so, you are not alone. Though each syndrome is different, patients and caregivers with rare epilepsies share many common seizures types, symptoms, and side effects.

During this webinar you will learn more about the rare epilepsies and the serious risks associated with these syndromes, including Sudden Unexpected Death in Epilepsy (SUDEP). You will be informed about the Rare Epilepsy Network (REN) and how it will help to identify better prevention and treatment options.


  • Dale Hesdorffer, PhD

    Dale C Hesdorffer is a Professor of Epidemiology in the Gertrude H Sergievsky Center and the Department of Epidemiology at the Mailman School of Public Health, Columbia University. She received her MPH and Ph.D. in Epidemiology from Columbia University. Dr. Hesdorffer’s work in epilepsy has focused upon incidence, risk factors, the co-morbidity, and mortality. She is the past Co-Chair of the Commission on Epidemiology for the International League against Epilepsy. She serves on the editorial boards of Epilepsy Research and Epilepsy and Behavior. Dr. Hesdorffer is an associate editor of Epilepsia and contributing editor for Epilepsy Currents. She is a member of the professional advisory board of the Epilepsy Foundation of America and a member of the SUDEP Institute. Dr. Hesdorffer serves on the Task Force on psychiatric aspects of epilepsy for the American Epilepsy Society and the Epilepsy Foundation of America and is participating in the writing of SUDEP guidelines for the American Academy of Neurology. Dr. Hesdorffer participated in the NIH Common Data Elements for epilepsy, chairing the epilepsy classification workgroup and participating in the comorbidity workgroup. In addition, she has served on two Institute of Medicine Committees – Gulf War and Health: Long-term Consequences of Traumatic Brain Injury and Epilepsy Across the Spectrum: Promoting Health and Understanding.

  • Jacqueline French, MD

    Dr. Jacqueline French is a Professor of Neurology at NYU’s Comprehensive Epilepsy Center and the Director of the Clinical Trials Consortium (an independent non-profit). She is the former Assistant Dean for Clinical trials at the University of Pennsylvania. Dr. French trained in Neurology at Mount Sinai Hospital in New York, and did her fellowship training in EEG and epilepsy at Mount Sinai hospital and Yale University. Dr. French has focused her research efforts on development of new therapeutics for epilepsy. She has been published many times, is an editor for publications and she lectures in the US and internationally. She served on committees of the American Academy of Neurology and is the immediate past president of the American Epilepsy Society She is the 2005 recipient of the American Epilepsy Society Service Award. She has served on the board of the American Epilepsy Society and the American Society of Experimental Therapeutics. She is the head of the scientific advisory board of the Epilepsy Therapy Development Project.

  • Janice M. Buelow, RN, PhD, FAAN

    Dr. Buelow has worked in the field of epilepsy for over 25 years as both a health care provider and as a researcher. After completing a post-doctoral fellowship in epilepsy research, she joined the faculty at Indiana University School of Nursing. Her research focuses on children with epilepsy and their families and self/family management. She has an expertise in research methodology having conducted multiple qualitative studies and intervention research. She has been funded both internally and externally including NIH funding. To further her work, she was invited to join the staff at the Epilepsy Foundation (EF) as the vice president of programs and research. In that role she not only directs the EF’s research agenda she is also in a position to partner with others to improve the quality of life of people with epilepsy.

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