Pierre Robin Australia

About Pierre Robin Australia community health support for Pierre Robin Sequence across Australia

Pierre Robin Australia is a not for profit community health charity run by parents of Australian children with Pierre Robin Sequence (PRS). It focuses on providing information, support and education to those affected by PRS and associated conditions, including sufferers, families and carers. As the only registered organisation for Pierre Robin within Australia, it works alongside members to empower them in managing and living with the condition.

Peer support and information network for PRS families

The charity’s main activity is a strong peer support network that enables information exchange, social connection and practical guidance for families and carers of children with PRS. Through daily contact, educational resources and links to other support services, it helps families respond to the complex medical, physical, social, emotional and developmental needs associated with Pierre Robin Sequence.

Mission and vision

Pierre Robin Australia exists to provide Information, Support and Education to people affected by Pierre Robin Sequence and associated conditions. Its vision is to build a strong peer network, a solid information bank developed with doctors and specialists, and to increase public and professional understanding of PRS so that the ongoing needs of sufferers are recognised and future opportunities are improved.

Main objectives

• Create a peer support network to reduce isolation and depression among families and carers.
• Assist families in coping with the high medical, physical, social, emotional and developmental needs of PRS.
• Build and share a comprehensive information bank in conjunction with doctors and specialists.
• Increase public and professional awareness and understanding of Pierre Robin Sequence.
• Encourage further research and data gathering on PRS.

Benefiting groups

• Children diagnosed with Pierre Robin Syndrome/Sequence and associated conditions.
• Families and carers managing the ongoing needs of a child with PRS.
• Sufferers of PRS seeking community, information and understanding.
• Parents, relatives, caregivers, friends, specialists and professionals who share an interest in PRS and wish to be part of a supportive community.

Types of services or activities

• Daily support for families, carers and sufferers via phone, email, in-home and hospital visits, and an online closed Facebook group.
• Social gatherings and events that foster belonging and connection for members.
• Peer-based information exchange and access to a dedicated website, brochures and information packs.
• Links and contacts to other relevant support services, including maxillofacial and genetic support services such as CleftPals.
• Education for the public through talks and presentations at conferences and hospital facilities.
• Public awareness and involvement through fundraising events and activities, encouraging wider recognition of PRS and its impacts.