Finding information about CHARGE syndrome can be a daunting task. You might be looking for something specific (medical information, for example) and don’t know where to start. OR you Google it and so much comes up that you don’t know how to sift through it. Parents, family members, professionals from all specialty areas come to our website to be better informed. Our goal is to make sure we can provide that information in an organized and helpful way. Therefore, we have searched the world and our own archives to bring you information about CHARGE syndrome.
We hope that this page gives you a good start and guides you to what you are looking for.
We invite you to suggest other resources for inclusion here so that others can learn from your experience.
CHARGE Syndrome Education Professional Packet
In response to the most common requests for information from educators and therapists, this packet was developed as a supplement to the Management Manual for Parents. The packet may be downloaded in sections or in full.
Education Professional Packet
CHARGE Syndrome: A Management Manual for Parents
Over 200 pages of information and forms to help parents manage the complexities that having a child with CHARGE Syndrome. (Available in Spanish.)
CHARGE Management Manual
CHARGE Syndrome Book
Published in 2010, and edited by Timothy Hartshorne, Ph.D, Margaret Hefner, MS, Sandra Davenport, MD, CM, and James Thelin, Ph.D, this book describes the sensory, physical, and behavioral findings in CHARGE, indicates what kinds of studies need to be done to confirm the findings, and describes how these findings affect the function and development of the individual with CHARGE. All royalties from this book benefit the CHARGE Syndrome Foundation. To order a copy, please visit http://www.pluralpublishing.com/publication_cs2.htm
New Parent Folder
A packet of information in a folder designed to help parents of a new baby (or newly diagnosed child) understand what CHARGE syndrome is, frequently asked questions, what to do now, information about the CHARGE Syndrome Foundation, and listing of some helpful resources. 10 pp.
New parents call 800-442-7604 for a folder at no charge or you may download the New Parent Folder (PDF)
CHARGE Syndrome Brochure
Download brochure (PDF)
CHARGE Information Pack for Practitioners (from Sense UK)
28 in-depth fact sheets about the many aspects of living with CHARGE syndrome, designed for professionals but useful for families as well.
CHARGE Accounts Quarterly Newsletters
A quarterly newsletter published by the CHARGE Syndrome Foundation primarily for parents of children with CHARGE syndrome. Information should also be helpful to medical and educational professionals dealing with these children. Included with membership in Foundation.
Webinars, Webcasts & Videos
CHARGE Syndrome Foundation Video
A video about the CHARGE Syndrome Foundation and what we do.
CHARGE Syndrome Foundation Webinars
CHARGE Syndrome Foundation Webinars are provided with support from the National Center on Deaf-Blindness
Perkins School for the Blind Webinars and Webcasts
ASHA CHARGE Syndrome Web Program
The American Speech-Language-Hearing Association (ASHA) has developed a CHARGE Syndrome Web Program. This program is accessible through the CHARGE Syndrome Foundation web site.
We Have CHARGE, So What! Video:
The German CHARGE Syndrome Association has produced a video of young adults who have CHARGE discussing their lives, living with CHARGE, their hopes and dreams. We have CHARGE, so what! from Claudia Junghans on Vimeo.
Build Your Toolkit
Emergency Info & Medical Record Keeping Templates
Directions for how to use these templates
My Child with CHARGE
The Foundation is committed to research into the causes, identification and treatment of CHARGE syndrome. Our Scientific Advisory Board and Research Committee help guide the Board of Directors in all areas of CHARGE related research. Please visit the Research page to read about their work or to learn more about the procedure for submitting a proposal. Current and past research listings are also available on the research page.
American Journal of Medical Genetics Articles
This issue of the American Journal of Medical Genetics came from the Behavior Strand at the 6th International CHARGE conference. Those papers on behavior are published here along with a few others, and some additional articles on CHARGE syndrome.
CHARGE Non-Vocal Pain Assessment
The CNVPA was created from parental input based on behaviors observed of children with CHARGE when they are experiencing pain and from the following references (used with permission from the authors of the NCCPC-R and the PPP):
CHARGE Non-Vocal Pain Assessment
CHARGE Syndrome Foundation Parent to Parent Resources
If you are interested in finding someone in your area please contact the foundation at 800-442-7604 or by sending an email to email@example.com for a list of families.
CHARGE Family Support Groups – US-based
CHARGE Syndrome Foundation Facebook Group
CHARGE Syndrome Foundation Facebook Page
Texas CHARGE Group
A group of Texas families, friends, and professionals who are dedicated to helping children and young adults who live with Charge syndrome.
CHARGE Family Support Groups – Worldwide
Australia – CHARGE Syndrome Association of Australasia Ltd
The CHARGE Syndrome Association of Australasia is a not-for-profit organization committed to improving the health and welfare of children and adults with CHARGE Syndrome. The Association supports families in Australia and New Zealand to enable children and adults with CHARGE Syndrome to reach their full potential.
Belgium – Belgian CHARGE Syndrome Website
Information by and for parents of children with CHARGE syndrome.
Germany – CHARGE Syndrome German
This is a non-profit self-help group in support of individuals with CHARGE and their families in German speaking countries (Germany, Austria, Switzerland, etc.).
France – Association CHARGE
French support group, formed in 1996 by parents.
Netherlands – Dutch CHARGE Syndrome Network
This site is the source of information about CHARGE based in the Netherlands. It is a site by and for parents of children with the syndrome, for schools, professionals and other interested parties.
Spain – Asociación Españoña Síndrome de Charge
Family support group based in Spain
UK FB page
The CHARGE Family Support Group UK
UK family support group that has been in existence since 1987.
A site about one family’s journey with CHARGE Syndrome
Other Deafblind Organizations
The links listed below are to help you in your search for more information regarding CHARGE syndrome. Please note that we do not control any of the information you may find on these sites.
National Consortium on Deaf-Blindness
National Consortium on Deaf-Blindness – NCDB works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training.
CHARGE Syndrome Articles and Bibliography at NCDB
The National Consortium on Deaf-blindness maintains a CHARGE Syndrome section with a variety of articles and both medical and general bibliographies.
NFADB (National Family Association for Deaf Blind)
This organization supports individuals who are deafblind and their families.
Perkins School for the Blind
Perkins – located in Watertown, Massachusetts, the school provides services to students from birth to 22 years of age who have visual impairments or those who are deafblind.
CDBS – California Deafblind Services
Deaf Blind resources from the UK
Web resources listing about deafblindness.
Texas School for Blind and Visually Impaired
A special public school in the continuum of statewide placements for students who have a visual impairment. It is also a statewide resource to parents of these children and professionals who serve them. Students, ages 6 through 21, who are blind, deafblind, or visually impaired, including those with additional disabilities, are eligible for consideration for services at TSBVI.
UK based group that is the leading national charity that supports and campaigns for children and adults who are deafblind.
Minnesota DeafBlind Technical Assistance Project
CHARGE Lab at Central Michigan University
The CHARGE Lab at Central Michigan University undertakes a variety of research projects relating to CHARGE and behavior.
Feeding Tube Awareness Foundation
Foundation providing support and information relating to tube-feeding.
Low Vision Gateway
Resources for vision loss, vision-impairment, blindness, low vision aids and low vision rehabilitation services.
Non-profit organization dedicated to preserving vision and to providing critically needed vision and rehabilitation services to help people of all ages overcome the challenges of vision loss.
National Joint Committee for the Communication Needs of Persons with Severe Disabilities
National Joint Committee for the Communication Needs of Persons with Severe Disabilities – The purpose of the NJC is to promote research, demonstration, and educational efforts, including both in-service and preservice, directed to helping persons with severe disabilities communicate effectively.
Exceptional Parent Magazine
Exceptional Parent Magazine – Magazine designed for families who have a child with a disability.
A project funded by Perkins that is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities.
May We Help
An organization based out of Cincinnati, Ohio that engineers and builds devices for people with disabilities to enhance their lives at no cost to them.