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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.

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CHARGE Syndrome Foundation Webinars
CHARGE Syndrome Foundation Webinars are provided with support from the National Center on Deaf-Blindness
CHARGE Webinars



Upcoming Webinars

The CHARGE Syndrome Foundation is trying something new and exciting for our 2020-21 webinar series.  

The National Center on Deaf-Blindness (NCDB) is offering a free Professional Development Series called Deaf-Blind Strategies now through December 2020. We encourage families to attend these high quality trainings on Wednesdays and then join us two days later to talk about how the content shared applies to our loved ones with CHARGE syndrome.

Click to Learn Topics include:

  • Academic Standards for Students with Significant Cognitive Disabilities (October 21)
  • Accessing Grade Level General Education Curriculum (November 4)
  • Early Literacy and Numeracy for Students who are Deaf-Blind (November 18)
  • IEP Development (December 16)

These should be of interest to families, educators, state deaf-blind project personnel, and any other individuals interested in deaf-blindness in children and youth. All sessions begin at 3:00 p.m. EDT and last 90 minutes.

The link to attend the NCDB Deaf-Blind Strategies sessions can be found here.

Click to Talk Fridays will be held on and at 1:00 p.m. EDT on the following dates:

  • October 23
  • November 6
  • November 20
  • December 18

To attend Click to Talk Fridays join us on Zoom. 


Meeting ID: 687 887 8176

Passcode: PARENTS

Sign up for eNews now. 

Speaker Series

The Foundation is excited to introduce a great opportunity for families to learn directly from the experts about CHARGE syndrome.

Let us know you are enjoying this series by giving the videos a thumbs up and remember to subscribe to our YouTube channel. Don’t forget to hit the notifications button in YouTube to be notified of future videos in the series. 

Priorities for New Families – Susan Wiley, MD – View Here

CHARGE Syndrome Checklist – Kim Blake, MD – View Here

Hand Flapping – Kate Beals, OT – View Here

Calendar Systems – Robbie Blaha, M.Ed – View Here

Managing CHARGE: Hidden Medical Issues Through the Lifespan – Kim Blake, MD – View Here

Cape Proprioception: The Awareness of Body Position and Movement – Elizabeth Foster, Ph.D. – View Here

Coloboma of the Eye – Eniolami Dosunmu, MD – View Here

CHD7, Genetics and Testing – Christa de Gues, MD – View Here


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 https://www.pluralpublishing.com/publications/charge-syndrome

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)

2017 American Journal of Medical Genetics Part C:  CHARGE Syndrome (12 papers total)
The December, 2017 issue of this journal was dedicated to updates on CHARGE syndrome – everything from CHD7 DNA information and genetic counseling to medical issues to behavior.  To see summaries of all of the papers (and links to the papers themselves), go HERE.

2005 American Journal of Medical Genetics Part A:  CHARGE Syndrome (17 papers total)
The March, 2005 issue of this journal was dedicated to CHARGE syndrome, with the papers coming from the symposium on Behavior in CHARGE presented at the 2003 International CHARGE Syndrome Conference in Cleveland. You can find those articles HERE.

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.

Read More About Other Resources

You Taught Me
This collection of stories provides a unique insight into how people with CHARGE Syndrome from around the world have lived their lives and touched the professionals they have gotten to know.  The booklet was initiated by members of the Deafblind International (DbI) CHARGE Network; one of several specialist networks that support the core activities of Deafblind International. The DbI CHARGE Network is an interdisciplinary network composed of teachers, intervenors, educators, therapists and doctors, among others. Whether you work with children or adults, you are welcome to join. We are also open to interested parents, grandparents, other relatives or friends, and to people with CHARGE syndrome themselves. We believe that sharing knowledge and experiences in this field is critical to our success. For more information on the Deafblind International CHARGE Network, please contact the chair of our network, Andrea Wanka (wanka@ph-heidelberg.de).  You can find the booklet HERE.


CHARTING the LifeCourse
The Charting the LifeCourse Framework was created BY FAMILIES to help individuals and families of all abilities and all ages develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. Individuals and families may focus on their current situation and stage of life but may also find it helpful to look ahead to think about life experiences that will help move them toward an inclusive, productive life in the future.

Even though it was originally created for people with disabilities, this universally-designed framework may be used by any person or family making a life plan, regardless of life circumstances.

READY Tool: Readiness Evaluation of Transition to Adulthood for Deaf-Blind Youth (available in both English and En Español) – A tool to help a transition team, which includes an individual who is deaf-blind, parents and professionals, to determine essential activities during the transition process.

CHARGE Syndrome Checklist: Health Supervision Across the Lifespan

A comprehensive approach to health screening and management for individuals with CHARGE syndrome is
essential. This checklist was developed by Carrie Lee Trider, Angela Arra-Robar, Kim Blake, and Conny van Ravenswaiij. It is organized by body system and age to guide the healthcare provider in their approach to care. The checklist was evaluated using a modified Delphi method to develop a final consensus. The goal of the checklist is that the recommendations will promote improvements in care by preventing missed diagnoses, allowing for anticipatory counseling, and facilitating early referral for interventions and treatments.

Download the CHARGE Syndrome Checklist


Read More About CHARGE Accounts Newsletters

CHARGE Accounts 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 working with individuals who have CHARGE. Included with Foundation membership.

CHARGE Accounts 


Read More About Videos

CHARGE Syndrome Foundation Video
A video about the CHARGE Syndrome Foundation and what we do.
Our Videos

Cincinnati Children’s CHARGE Center Conference 2016 Videos


Perkins School for the Blind Webinars and Webcasts
Perkins eLearning

Accessible Books and Literacy: Supporting and Encouraging a Love for Literacy

Other Webinars
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.

Got Balance? Balance and Stability Activities for Children with CHARGE Syndrome Video:
This video provides examples of activities that can be done to improve balance and stability in children who have CHARGE syndrome. By Lauren Lieberman, Ph.D, Pamela Haibach-Beach, Ph.D, Melanie Perreault, Ph.D, Aaron Wood, Jennifer Vanetten, Jenna Sherwood.



Read More About Emergency & Records Toolkit

Build Your Toolkit

Emergency Info & Medical Record Keeping Templates
Read Me First
Medical References and Management Issues

ER & MD Info
ER & MD info

Vaccination Record
Vaccination Record

My Child with CHARGE
My Child with CHARGE

Emergency Card
Emergency card


Read More About Research Publications

Research Publications

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.


Read More About Behavior & Pain Assessment

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 


Read More About Support Groups

Support Groups

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 info@chargesyndrome.org 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 Network through Deafblind International
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

United Kingdom
UK FB page

The CHARGE Family Support Group UK
UK family support group that has been in existence since 1987.

CHARGE Syndrome.Info
A site about one family’s journey with CHARGE Syndrome


Read More About Other Deafblind Organizations

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.

Sense UK
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

Deafblind International


Read More About Other Assorted Websites

CHARGE Lab at Central Michigan University
The CHARGE Lab at Central Michigan University undertakes a variety of research projects relating to CHARGE and behavior.

Bulldog CHARGE Syndrome Research Lab
Research and Awareness Lab for CHARGE Syndrome at Mississippi State University. Mission to improve the lives of individuals with CHARGE.

Cincinnati Children’s CHARGE Center
The CHARGE Center at Cincinnati Children’s is  a center designed to help families negotiate both the medical and developmental challenges associated with this condition. A nurse coordinator will work with you and a team of specialists will review your son or daughter’s records and work with your family on a plan of action.

Exceptional Parent Magazine
Exceptional Parent Magazine – Magazine designed for families who have a child with a disability.

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.

Lighthouse Guild
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.

National Library Service for the Blind and Print Disabled
National Library Service (NLS) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical disability that prevents them from reading or holding the printed page.

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.

CheckRare is a rare disease and advocacy website for health care professionals, patients, and caregivers. They focus on rare diseases, new and emerging therapies, clinical trials, diagnostics, and the companies behind them.