Dear Dr. Kim
Dr. Kim Blake is one of the leading researchers in CHARGE Syndrome and has been working with individuals with CHARGE syndrome for about 20 years. She has agreed to answer your questions.. One question will be selected per newsletter. Please send your questions to CHARGE Syndrome Canada with "Dear Dr. Kim" in the subject line.
When my child was born, he was diagnosed with "CHARGE Association". How is this different from "CHARGE Syndrome".
Basically its a question of semantics. The original literature talks about the "association" of "like" characteristics. We need to use the term "Syndrome". "Its up to you parents to keep educating the doctors."
The Canadian gene research will help us more clearly define what CHARGE is. To register for the Canadian CHARGE Syndrome gene research study, please fill out the consent forms and send them along.
CHARGE Syndrome Canada Newsletter Christmas 2005 <back to newsletter>