About Us

Pierre Robin Australia (PRAISE) is a not for profit community health charity, providing Information, Support and Education to those affected by Pierre Robin Sequence (PRS) and associated conditions. 

Pierre Robin Australia began as a social parent support group in early 2008, after parents of a child born with the condition struggled to find assistance.  Through dedication and the generous support of many, PRAISE was formed. As the only registered organisation for Pierre Robin within Australia, PRAISE proudly works in support of its members to empower them in managing and living with the condition.

Pierre Robin Australia is a community health promotion charity which exists to provide Information, Support and Education to sufferers, families and carers of children diagnosed with Pierre Robin Syndrome/Sequence (PRS) and associated conditions. To empower them in managing and living with the condition. 

We are the only group of our kind in Australia for this condition, support individuals around Australia, with an increasing number of enquiries also coming in from overseas. 

Our aim is to create a strong peer support network to assist information exchange and increase social interaction opportunities for families and carers, to help them cope with the high level medical, physical, social, emotional and developmental needs of their seriously ill child. Peer support helps to reduce the feelings of isolation, extreme stress and depression that many families and careers experience following diagnosis and through the years ahead that often lead to family breakdown.  

Pierre Robin Australia also aims to build a solid information bank in assistance with doctors and specialists in various fields, that can be provided to families to help educate them on their child's condition and advise them of the many forms of support services and assistance available to them. We are constantly working to increase public and professional awareness and understanding of the condition and help individuals to recognize the ongoing needs of sufferers, increasing opportunities for their future.  

 In summary PRAISE provides the following services:

• Daily support to families, carers and sufferers via phone, email  and in home and hospital visits and on line forum
• Social gatherings and events for members 
• Sense of belonging - of “fitting” in 
• Information exchange through peer support 
• Newsletters
• Website  
• Brochures and Information packs 
• Links and contacts to other relevant support services 
• Work in conjunction with other maxillofacial and genetic support services including Cleft Pals
• Education for the public through talks and public presentations at conferences and hospital facilities
• Looking to gather data and encourage further research
• Public awareness and involvement through fundraising events and activities

Our members and volunteers consist of parents, relatives, caregivers, friends, specialists and professionals who all have a shared interest in PRS.

There are many issues associated with PRS, which are unique to the condition and caring for a child with additional needs can be overwhelming.

We are here to help

Through our services, members receive the support they need today and gain friendships they’ll keep well into tomorrow.