The CHARGE Syndrome Clinical Database Project (CSCDP) is an internet web-based questionnaire designed to collect clinical data on individuals with CHARGE syndrome (CS). Our aims are to: collect information on people with CS of all ages from all over the world, use the collected data to understand more about CS and how it affects different […]
The Foundation has asked families and professionals to recommend physicians or therapists who have been helpful to your family, who are knowledgeable about CHARGE syndrome or have been willing to learn and go that extra mile. If you are looking for a physician or therapist in your area, please email sheri@chargesyndrome.org – indicate your name, […]
The CHARGE Syndrome Clinical Database Project (CSCDP) is an internet-based questionnaire designed to collect clinical data on individuals with CHARGE syndrome (CS). Our aims are to: collect information on people with CS of all ages from all over the world, use the collected data to understand more about CS and how it affects different […]
CHARGE is an incredibly complex syndrome that involves numerous medical, educational, developmental, social and behavioral issues. As a result, there are many different ways to help the Foundation and individuals with CHARGE address these challenges. The information we obtain from professionals and families can be passed onto others by becoming a state liaison, making provider […]
Dr. Timothy Hartshorne and Anna Weatherly (doctoral student) from the CMU CHARGE Syndrome Research lab are investigating what the experience of fatigue is like for adolescents and adults with CHARGE syndrome. For this part of the study, they are seeking to examine the severity with which individuals with CHARGE syndrome experience fatigue symptoms compared to […]
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