resources | Charge Syndrome Foundation

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Other Resources

You Taught Me This collection of stories provides a unique insight into how people with CHARGE Syndrome from around the world have lived their lives and touched the professionals they have gotten to know. The booklet was initiated by members of the Deafblind International (DbI) CHARGE Network; one of several specialist networks that support the […]

Management Manual for Parents

(c2002–Edited by Meg Hefner, M.S. & Sandra Davenport, M.D.) The CHARGE Syndrome Management Manual for Parents breaks down CHARGE into some of its components. The Medical sections are by body system. Each topic includes a For Physicians and For Parents section. “For Physicians” lists the features of CHARGE within that specialty. “For Parents” reviews the […]

Webinars

CHARGE Syndrome Foundation Webinars are provided with support from the National Center on Deaf-Blindness. If you have a suggestion for a future webinar topic, please send it to info@chargesyndrome.org. Stay tuned for additional training in the works for 2021! Sign up for eNews now. ARCHIVED WEBINARS – > MOVING TO OUR YOU TUBE […]

Resources

Finding information about CHARGE syndrome can be a daunting task. You might be looking for something specific (medical information, for example) and don’t know where to start. OR you Google it and so much comes up that you don’t know how to sift through it. Parents, family members, professionals from all specialty areas come to […]

Medical Professionals

Physicians & Genetic Counselors CHARGE syndrome is an extremely complex and variable syndrome most often caused by mutations in the CHD7 gene on chromosome 8. Diagnosis relies on key clinical features as well as DNA information. The range of intellectual ability in CHARGE covers the entire spectrum, with potential routinely underestimated. The combination of complex (often […]

Education Professional Packet

If you are an educator or therapist with a student/client with CHARGE syndrome, this information is for you. This packet was developed to provide a brief introduction to the complex world of CHARGE and some strategies to consider in education and therapeutic settings. Read the ASHA Leader reprint for an overview of genetics, clinical diagnosis, ears […]

For Families

You found this page because you need information about CHARGE syndrome. You might have a new baby, a toddler or an older child who has just been diagnosed with CHARGE; you might be an adult who is beginning to realize that your constellation of vision, hearing, and health issues might be CHARGE syndrome; or you […]