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CHARGE Syndrome Professional Packet

Practically every week, we at the Foundation get a request from one professional or another, asking for information on CHARGE.  Most often it is a therapist or educator who has or soon will have a child with CHARGE in their classroom or as a client.  They want to know many things, including, What is this thing CHARGE?  What do I need to know about it?  How can I best serve this child?  In response to these requests, we have put together a packet of information for professionals.  The sections were written by a variety of professionals with many years of experience with children with CHARGE syndrome. 

This project was a collaborative effort.  I especially want to thank Pam Ryan, who not only helped figure out what needed to be in the packet, but also found professionals to write the sections in a timely manner.

Although we feel this is already a fabulous resource, we know it can be expanded and improved.  We need feedback:  what works, what is missing (and who do YOU know who can write the parts that are missing), what can be improved... Please keep in mind that this is in no way meant to replace the Management Manual for Parents.  It is a supplement for educators and therapists.  Send all of your comments and other feedback to me at meg@chargesyndrome.org


The professional packet below is an interactive publication in Adobe PDF Format. If you do not already have the free reader installed, download Acrobat Reader. The sections may be downloaded individually by clicking on the article name or altogether by clicking on the "Full CHARGE Syndrome Professional Packet" link at the bottom of the article listings.  If you need to order a printed version, contact the Foundation.  There will be a charge to cover printing and postage on printed versions.  Pass this information on to the professionals who work with your children, even those who already have lots of experience!

-Meg Hefner, Genetic Counselor and Special Advisor to the Board


CHARGE Syndrome Professional Packet Adobe Acrobat Symbol

 Introduction To The Packet  by Meg Hefner
Full CHARGE Syndrome Professional Packet (730KB)



Get the free Adobe PDF reader This Professional Packet is in the Adobe PDF format. If you do not have the free PDF program, you can download it here.