Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups


In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions. During the COVID-19 pandemic, this cohort/sector has been recognised by the State Government as being amongst the most vulnerable in the community. 

As such, the WA Department of Health (Office of Population Health Genomics) has engaged ConnectGroups to develop a 25-30 minute online survey. Click here to view the flyer.

Who is eligible to complete the survey?

Leaders of any peer support group or NGO that supports Western Australians living with a rare, genetic or undiagnosed condition. 

WA Department of Health’s goal in commissioning this survey:

To foster the long-term sustainability of these groups by identifying and addressing current gaps in service delivery.

Who is conducting the survey:

ConnectGroups is the peak body for peer support in WA, and is the voice of over 690 groups across the state for mental health, chronic and genetic conditions, social isolation and other life adversities. Click here to learn more about ConnectGroups.

ConnectGroups is looking to hear directly from rare disease NGOs and peer support groups who have members in WA and can provide valuable insights into the ongoing training, funding and support that is needed in this sector. To achieve the intended outcomes, we invite leaders to complete this 25-30 minute survey by 23 March 2021.

The survey covers the following areas:  

1.       How your support group/organisation operates.  

2.       What services your support group/organisation provides.  

3.       What assistance your support group/organisation requires to continue to deliver these services. 

All questions require a response for the survey to be submitted. ConnectGroups encourages respondents to make use of the ‘N/A’, ‘I don’t know’, and ‘Other’ options if they are unable to respond. For questions that require a number to be entered, please enter ‘000’ if you do not want to respond.  

ConnectGroups would like to thank you for participating in this sector consultation. Your response will be highly valuable in providing a clear and complete image of the NGO sector in WA and of the way forward.  

If you have any questions about the survey or if you’d like to undertake a phone survey, contact ConnectGroups by phone: 08 9364 6909.