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. (Also available in Spanish.)
CHARGE Management Manual
CHARGE Syndrome Book
Updated in 2021, and edited by Timothy Hartshorne, Ph.D, Margaret Hefner, MS, and Kim Blake, MD, this book describes the sensory, physical, communicative, and behavioral findings in CHARGE. Authors include experts in the field, including a number from the CHARGE Center at Cincinnati Children’s Hospital Medical. New in this second edition: A chapter on educational issues. All royalties from this book benefit the CHARGE Syndrome Foundation. To order a copy, please visit https://www.pluralpublishing.com/publications/charge-syndrome-1
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
For Families: Download brochure (PDF)
En Español
For Professionals: Download brochure (PDF)
En Español
4to24 App: Transition Guidance for Parents
The National Research and Training Center on Blindness and Low Vision created an app for parents of children with both hearing and visual impairments called 4to24. As the name suggests, it is for parents whose child is between ages 4 and 24. Its purpose is to provide information, resources, and suggested activities that parents can use to help plan for and navigate their child’s transition from youth to adulthood and all that that entails.
To read the full article, click here.
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 fiviewd 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.
https://www.sense.org.uk/content/charge-information-pack-practitioners
