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CHARGE Syndrome Sibling Research

Following on from the CHARGE Australasia 2024 Conference, we would like to invite:

  • Siblings aged 18+ who have a brother or sister with CHARGE syndrome
  • Parents (any age!)

To come together in an online discussion to:

  • Explore ways in which research could be directed specifically to benefit siblings who have a brother or sister with CHARGE syndrome
  • Discuss sibling unmet support needs, and generate ideas of how to address these needs
  • Discuss ways to support parents in their role supporting siblings

Focus groups will be online and comprised of 4-5 participants. Sibling and parent discussions will be held separately, and you will be paid for your time.

To express your interest, email: siblings@telethonkids.org.au or complete the online form below.