Professional support

Local professional support

Because CHARGE syndrome is rare, local experts can be hard to find. Here is our list of practitioners and providers who understand CHARGE syndrome.

If you’ve worked with someone who has strong experience with CHARGE syndrome, please tell us—so we can share their details and help others find the right support sooner.

Steve Rose

Speech and Language Therapist and Deafblind Consultant - Vision Australia, Victoria.

Steve Rose is a Certified Practicing Speech Pathologist based at Vision Australia in Melbourne, with experience of working in the deafblind field for over 25 years. He has established skills in the engagement, assessment and management of children and young people with profound and multiple disabilities, relating to sensory impairment and associated conditions. This includes deafblindness, cerebral palsy, autism, and other rare diseases. Steve is passionate about developing evidence-based practices focusing on parent-child interaction, tactile communication, and early intervention. He is a national advisor (deafblindness) for Royal College of Speech and Language Therapists and an active collaborator in national and international groups focusing on deafblindness, tactile language and cognition.

Niall Jefferson

Deafblind Information Australia

Deafblind Information Australia was established in 2020, and is a consortium of SensesWA, Able Australia and Deafblind Australia. Deafblind Information Australia provides evidence based, high quality information on topics related to deafblindness including:

  • Causes of deafblindness

  • Impacts of deafblindness

  • Deafblind communication strategies, methods and techniques

  • Assistive technology

  • Orientation and mobility

  • Assessment

  • Early intervention

  • The life experience of people with deafblindness

  • Relevant services

  • Deafblindness and the NDIS

Visit the Deafblind Information Australia website