Family Survey 

Living with Rare Disease: The Impacts on your Child and your Family

A big “Thank You!!!” to all families who completed the survey so far. Your voice has been heard – we have learnt new important information to support advocacy for better health services and will be sharing the results soon.

Haven’t had the chance to complete the survey yet???  There is still time to have your say – you will be adding your voice to support better health services for children and young people living with rare disease!!!

What is the project about?

We would like to invite you to be a part of a project that looks at the experiences of families like yours, who are caring for a child with a rare disease or condition. There are approximately 8000 different rare diseases affecting an estimated 2 million Australians, including 400,000 Australian children. Approximately 70% of all rare diseases are of genetic origin; however, some are due to rare infections, injuries or mental hea

lth problems. 

For the first time in Australia, this project brings together a number of rare disease charitable organisations, including the Association of Genetic Support Australasia (AGSA), The Steve Waugh Foundation, SMILE foundation and the Children's Hospital at Westmead to work with a nationally recognised research partner at the University of Sydney, the Australian Paediatric Surveillance Unit (APSU), to adopt a coordinated approach to the provision of better support services, educational opportunities, and information resources for families of children with rare diseases. This approach will greatly increase the awareness of rare diseases amongst the public and government sectors and provide a knowledge base about rare diseases for future research in this neglected area.

We have developed a survey for parents/carers of children with rare diseases to explore your experiences during the diagnosis period, the health related function of your child, the impact that caring for your child has had on your family and your experiences with Health and Support Services.

What will it involve?

You will be asked to complete a survey about your child(ren) aged less than 19 years with a rare disease/condition and your family and using the link provided below.  The survey will take about 1 hour to complete.

What will happen to the information collected?

All information you provide is confidential.

The information we collect will be anonymous, it will not contain your name, your child’s name or contact details. Each survey will have a code attached that will be linked with each family.  Only our organisation will have access to that code which will be kept in a secure database. Only the research team collecting the data will have access to your questionnaire answers but not any identifying information about you.  All survey responses will be entered onto a computer protected by a password in a locked office in a secure building at the Children’s Hospital at Westmead.  Data from the study will be analysed and published, but will not contain any data which could identify individu

als, including your child or your family. Only summary data will be published. 

Feedback will be provided to you through our newsletters informing you of results and how they will be used to inform improvements to support services, educational opportunities and information resources for families such as yours.

Do I have to take part in the study?

Participation in this survey is completely voluntary. If you do decide to be a part of this project, by completing the survey, you will be giving consent for us to use the anonymous information you have provided.You are able to withdraw from the study at any time.

Are there any concerns you have with the study?

If you have any concerns or issues regarding this study or questions asked in the survey please contact the APSU on 9845 3005 or Dr Marie Deverell at If you have specific questions about the survey or the design of this research, please contact:

This research study has been approved by the Sydney Children’s Hospitals Network, Human Research  Ethics Committee  (HREC reference number 10/CHW/75).

This research is supported under the Australian Research Council's Linkage Projects funding scheme (project number LP110200277)


Please click here to complete the survey


Survey instructions

Information sheet


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