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

 

COLORADO

The Sturge-Weber Foundation

Aurora, CO

CureGRIN Foundation        

Parker, CO  


KCNQ2 Cure Alliance        

Denver, CO 


Lightning and Love Foundation        

Denver, CO

CONNECTICUT

CACNA1A Foundation      

Norwalk, CT 

CALIFORNIA

Chelsea's Hope

Sacramento, CA 

 

Jordan's Guardian Angels        

Sacramento, CA


CSNK2A1 Foundation        
San Francisco, CA


SMC1A Foundation  

San Francisco, CA


CureSHANK        

Beverly Hills, CA   

LGS Foundation        

San Diego, CA

 

PMG Awareness Organization, Inc.        

Newport Beach, CA

RASopathies Network

Altadena, CA


Syngap Research Fund

Palo Alto, CA


TESS Research Foundation        

Menlo Park, CA 


The Brain Recovery Project: Childhood Epilepsy Surgery Foundation        
Los Angeles, CA 

 

Ring14 USA        

California

Foundation for Angelman Syndrome Therapeutics    

California  

 
 

DELAWARE

The DDX3X Foundation   

Wilmington, DE

DISTRICT OF COLUMBIA AREA

FLORIDA

BPAN Warriors  

Boca Raton, FL 

CHAMP1 Research Foundation        

Spring Hill, FL

Phelan-McDermid Syndrome Foundation       

Osprey, FL

 

IDAHO

Coalition to Cure CHD2        

Boise, ID

ILLINOIS

Aicardi Syndrome Foundation

St. Charles, IL 


Angelman Syndrome Foundation       
Aurora, IL 

 

Citizens United for Research in Epilepsy (CURE)        

Chicago, IL 

American Epilepsy Society (AES)  

Chicago, IL 


GRIN2B Foundation        

Illinois

INDIANA

Glut1 Deficiency Foundation        

Evansville, IN

 

KENTUCKY

Child Neurology Foundation            

Lexington, KY

LOUISIANA

Chromosome 9p minus Network        

Baton Rouge, LA 

 
 

MARYLAND

Epilepsy Foundation        

Bowie, MD 

 

Tuberous Sclerosis Alliance        

Silver Spring, MD

MAINE

Foundation for USP7 Related Diseases         

Falmouth, ME 

 

MASSACHUSETTS

FamilieSCN2A Foundation        

Massachusetts

MICHIGAN

Hope for HIE        

Michigan

MINNESOTA

NR2F1 Foundation   

Rochester, MN 

 
 

NEW JERSEY

Dravet Syndrome Foundation        

Cherry Hill, NJ 

 

Malan Syndrome Foundation       

Old Bridge, NJ

 

The DESSH Foundation        

Vernon, NJ

NORSE Institute

New Jersey

NEW YORK

CACNA1H Alliance        

Saratoga Springs, NY


CMCD Foundation        

Saratoga Springs, NY 

 

CureDRPLA

Brooklyn, NY


Cri du Chat Research Foundation          

Brooklyn, NY


KIF1A.ORG        

New York, NY 


Project 8p     

New York, NY 


Autism Science Foundation / AGENDA        

New York, NY

SNAP25

New York, NY


FOXG1 Research Foundation

Sands Point, NY 

 

The Cute Syndrome Foundation

Troy, NY

NORTH CAROLINA

Dup15q Alliance       

Matthews, NC 


Koolen-de Vries Syndrome Foundation        

Wilmington, NC 


STXBP1 Foundation        

Apex, NC

OHIO

Batten Disease Support and Research Association         

Columbus, OH


Gould Syndrome Foundation (COL4A1/A2)        

Cleveland, OH


Hope for ULD       

Stow, OH


International Foundation for CDKL5 Research        

Wadsworth, OH 


KCNA2 Epilepsy        

Independence, OH 

NEVADA

Mickie's Miracles        

Las Vegas, NV 

 

TENNESSEE

COMBINEDBrain      

Brentwood, TN 

TEXAS

CFC International         

Austin, TX

 

SLC6A1 Connect       

Dallas, TX

 

VIRGINIA

KPTN Alliance        

Arlington, VA


The Bow Foundation        

Charlottesville, VA

Alliance to Cure Cavernous Malformation

Charlottesville, VA

Louies Huwe

Stafford, VA

 

INTERNATIONAL

Genetic Epilepsy Team Australia

Melbourne, Australia


SCN2A Aust/NZ/Asia    

Melbourne, Australia


WWOX Foundation        

New South Wales, Australia


The KCNC1 Foundation

Ontario, Canada


PVNH Support & Awareness        

British Columbia, Canada


Nonsense mutations foundation        

Israel


Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)        

Madrid, Spain


FUNDACION LIBELLAS        

Madrid, Spain


Ring20 Research & Support UK CIO        

Essex, UK


The Schinzel-Giedion Syndrome Foundation        

West Sussex, UK


Glut1 Deficiency UK        

Arbroath, UK

WASHINGTON

FAM177A1 RESEARCH FUND

Mercer Island, WA