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Where's the Rare?
The Rare Epilepsy Network has collected the locations of all REN Members and implemented them into a map to streamline the searching process for a rare epilepsy organization and show which multiple locations may be located. REN has also listed the organizations below as a resource for families to find a community that fits their diagnosis and needs. We hope this resource will also help clinicians make referrals of patients to communities of interest. Although many of these organizations are headquartered in the U.S., most if not all serve national and international constituencies.
Disclaimer:
The information about the REN Organizations may change between annual updates. Email info@rareepilepsynetwork.org to report any problems you encounter with the contact information posted below. Please note that listing these organizations on our website does not mean that we are endorsing them.
None of the information provided by the Rare Epilepsy Organization, including the identification of REN Member organizations, is intended as medical advice and should not be relied upon as a substitute for professional consultation with a qualified healthcare provider familiar with a patient’s medical needs.
All information listed in the map is also repeated below. Click one of the following letters to be directed to the corresponding state name. Or use CTRL + F (on windows) or COMMAND + F (on mac) and enter your organization's name.
ARIZONA
Hope for Hypothalamic Hamartomas
Arizona
COLORADO
Aurora, CO
Parker, CO
Denver, CO
Denver, CO
CONNECTICUT
Norwalk, CT
CALIFORNIA
Chelsea's Hope
Sacramento, CA
Jordan's Guardian Angels
Sacramento, CA
CSNK2A1 Foundation
San Francisco, CA
San Francisco, CA
CureSHANK
Beverly Hills, CA
LGS Foundation
San Diego, CA
PMG Awareness Organization, Inc.
Newport Beach, CA
Altadena, CA
Palo Alto, CA
Menlo Park, CA
The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
Los Angeles, CA
California
Foundation for Angelman Syndrome Therapeutics
California
DELAWARE
Wilmington, DE
DISTRICT OF COLUMBIA AREA
Bridge the Gap - SYNGAP Education and Research Foundation
Washington, DC
Washington, DC
Washington, DC
FLORIDA
IDAHO
Boise, ID
ILLINOIS
St. Charles, IL
Angelman Syndrome Foundation
Aurora, IL
Citizens United for Research in Epilepsy (CURE)
Chicago, IL
American Epilepsy Society (AES)
Chicago, IL
Illinois
INDIANA
Evansville, IN
KENTUCKY
Lexington, KY
LOUISIANA
Baton Rouge, LA
MARYLAND
MAINE
MASSACHUSETTS
Massachusetts
MICHIGAN
Michigan
MINNESOTA
Rochester, MN
NEW JERSEY
Cherry Hill, NJ
Old Bridge, NJ
Vernon, NJ
New Jersey
NEW YORK
Saratoga Springs, NY
Saratoga Springs, NY
Brooklyn, NY
Cri du Chat Research Foundation
Brooklyn, NY
New York, NY
New York, NY
Autism Science Foundation / AGENDA
New York, NY
New York, NY
Sands Point, NY
Troy, NY
NORTH CAROLINA
OHIO
Batten Disease Support and Research Association
Columbus, OH
Gould Syndrome Foundation (COL4A1/A2)
Cleveland, OH
Stow, OH
International Foundation for CDKL5 Research
Wadsworth, OH
Independence, OH
NEVADA
Las Vegas, NV
TENNESSEE
Brentwood, TN
TEXAS
VIRGINIA
Arlington, VA
Charlottesville, VA
Alliance to Cure Cavernous Malformation
Charlottesville, VA
Stafford, VA
INTERNATIONAL
Genetic Epilepsy Team Australia
Melbourne, Australia
Melbourne, Australia
New South Wales, Australia
Ontario, Canada
British Columbia, Canada
Israel
Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)
Madrid, Spain
Madrid, Spain
Ring20 Research & Support UK CIO
Essex, UK
The Schinzel-Giedion Syndrome Foundation
West Sussex, UK
Arbroath, UK
WASHINGTON
Mercer Island, WA