2009 CHARGE Conference:

Get information on the CHARGE Conference 2009 Join us for the 2009 conference at the Indian Lakes Resort in Chicago, Illinois.

Get info about our past conferences.


CHARGE Syndrome Foundation Video

CHARGE Foundation Video View a video about the foundation.


Resources

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.
Cost: New parents call 800-442-7604 for a folder at no charge.
$3.00 each; 4 for $10.00; 25 for $50 or you may download it here for free. 

Order Form

To order hard copies of any resources listed on this page, please download the order form in PDF format and send it along with your payment to the address on the order form.

CHARGE Syndrome 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.

View and download Professional Packet                                                                    

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. Copies of the journal are available from the Foundation at a cost of $20.
View American Journal of Medical Genetics Articles


CHARGE Accounts:

A quarterly newsletter primarily for parents of children with CHARGE syndrome. Information should also be helpful to medical and educational professionals dealing with these children. Included with annual membership in Foundation.
View CHARGE Accounts Archives


CHARGE Syndrome: A Management Manual for Parents
(c2002--Edited by Meg Hefner, M.S. & Sandra Davenport, M.D.):

The manual is an "interactive" publication. Version 2.1 consists of over 200 pages, printed and punched to fit a 3-ring binder (you supply the binder and dividers for the sections). There are sections directed to the professionals and others to the parents. Includes a Medical Visit Pad. (Available in Spanish.)

What do you get in the manual?

View & Print the Manual Online
OR
Order a Manual (PDF Format Order Form)
($25.00 including shipping)

CHARGE Syndrome Medical Bibliography (Revised December 2005):

A listing of medical articles on CHARGE syndrome. These articles were intended for geneticists and other medical specialists. The mailing will be references only, not the articles themselves. Your librarian can help you find these references, and sometimes authors have copies which can be mailed out.
Cost: $4.00

CHARGE Syndrome Brochure:

Cost: Single copies are free; quantity prices are $ .10 each.

CHARGE Syndrome Questionnaire:

A 7-page questionnaire covering pregnancy, development, and family life as well as a list of features your child has which are common to CHARGE syndrome.
Cost: No charge 

Parent to Parent:

If you are interested in finding someone in your area please contact the foundation at 800-442-7604 or by sending an email to Marion Norbury, Director of Family Services, for a list of families.

Past Conference Papers:

These packets contain the handouts from many of the speakers and breakout presenters. Papers are available from 1997, 1999, 2001, 2003, 2005 or 2007. 2007 is also available on a CD or you may download it here for free.
Cost: $25.00 each


If you do not have Adobe Acrobat, you can download the free PDF reader.


Other Online CHARGE Resources

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.

If you know of a website that should be listed below, please send an email to Neal Stanger.