Understanding CHARGE Syndrome

Understanding CHARGE Syndrome is a free online course designed to improve and expand understanding and knowledge of CHARGE Syndrome.

Course Overview

The best CHARGE experts from all over the world have their knowledge and experience
compiled to bundle this into one course.
The course is intended for anyone interested in CHARGE syndrome:

  • People with CHARGE syndrome
  • Parents, families and carers
  • Medical and nursing professionals
  • Healthcare professionals
  • Educational professionals
  • Early support facilities
  • Advisors, service providers, employees of offices and approval offices

The course consists of the following 6 modules::

Module 1:The CHARGE Syndrome

  • General information about CHARGE syndrome
  • Genetics
  • Main criteria
  • Additional criteria
  • Early development overview
  • Sensory problems

Module 2:Medical Aspects

  • CHARGE checklist
  • Bone Health
  • Cranial nerve dysfunction
  • Upper gastrointestinal tract
  • digestion
  • Constipation
  • Overview of eating habits
  • Hormonal problems

Module 3:Communication

  • Early communication
  • Sign Language
  • Hearing in CHARGE Syndrome
  • Hearing aids and technologies
  • Hearing tests for CHARGE syndrome
  • Risks and benefits of auditory aids

Module 4:Perception

  • The Forgotten Senses
  • The proprioceptive sense
  • The vestibular sense
  • Research on proprioception and the vestibular sense
  • Relationship between vision and posture
  • Posture
  • Glasses supply
  • Vision and retinal detachment
  • Self-regulation

Module 5:Behavior and Pain

  • Behaviour in CHARGE syndrome
  • Behaviour triangle in CHARGE syndrome
  • Pain in CHARGE Syndrome
  • What are the effects of pain on behavior?

Module 6:Education

  • Education and training
  • Report on CHARGE syndrome
  • School
  • Transition to adulthood
  • Need for support
  • People-centric planning
  • Assessment of reviews

The course has been translated from English to German. In all videos there is the possibility to hear the original sound or the German translation. Furthermore, each video also has a translation into sign language.
The subtitles feature is not yet available for all videos.

We would like to thank the KKH (commercial health insurance company) for supporting this project as part of self-help support at federal level in accordance with Section 20h of the Social Code (SGB) V.

We would also like to thank the following people, without whom the course would never have been possible:

* Ms. Sandra Noorlander from konferenz-dolmetscher.com for the voiceover
* Andrea and Karina Knipping from viamanum.de for the sign videos
* Mr. Heijo Drop from hd-videoproduktion for editing and creating the videos

Finally, we would like to say thank you to the CHARGE group in Australia chargesyndrome.org.au for making all the materials available to us and us at all times were available for questions.