Category: News

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

Posted on | by Sarah Cannata | Leave a Comment on Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups
News

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.

Dr Jim McGill receives 2021 Australia Day Honours

Posted on | by Sarah Cannata | Leave a Comment on Dr Jim McGill receives 2021 Australia Day Honours
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Rare Voices Australia (RVA) congratulates Dr Jim McGill on his 2021 Australia Day Honour for significant service to metabolic medicine, to biochemical genetic pathology, and to medical education.

Dr McGill is a longtime champion of rare diseases. He is a world leading expert in a range of metabolic conditions and is a leader in providing person-centred care. Additionally, he has a long history of providing excellent clinical care and compassion to Australians living with a rare disease and their families. Dr McGill’s dedication, generosity, and commitment to providing Australians living with a rare disease with a better quality of life, expert medical care, high quality research and support, is exceptional.

Over the course of his career, Dr McGill has participated in countless rare disease-related committees, conferences and has held numerous leadership roles. He has changed the lives of a countless number of Australian children as a passionate advocate for newborn screening. His work continues to ensure that Australia is a world leader in newborn screening in terms of uptake, quality, number of conditions diagnosed and safety. 

Now retired from clinical practice, Dr McGill will be missed by his patients around Australia. RVA thanks Dr McGill for all of his work in the rare disease sector and for his immeasurable contribution!

WA Department of Health Stakeholder Consultation Focus Groups

Posted on | by Sarah Cannata | Leave a Comment on WA Department of Health Stakeholder Consultation Focus Groups
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The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to West Australians living with rare, genetic and undiagnosed conditions and their families, and how the community navigates these systems. If you live in Western Australia (WA), the OPHG would like to know more about your and your family’s experiences. If your organisation/group has members who are based in WA, please feel free to pass on this invitation to them. See the flyer for the full details.

Stakeholder consultation focus groups


The OPHG is holding a number of stakeholder consultation focus groups for those living in WA with a rare, genetic or undiagnosed condition and/or their families. Your participation will help to shape the future services and system navigation for those living with genetic, rare and undiagnosed conditions across Western Australia.

The details are listed below.

Location: Face to face in Perth CBD (address to be provided) with online video conference options available.
Dates: Participants may choose from a morning or evening session on 2nd, 3rd, 8th or 9th of February.
Why: Community input plays a critical role in how future services are designed to create better outcomes.
RSVP: To learn more or register your interest please email [email protected] or call 08 9222 2239.

Participants will be renumerated by the OPHG for their time.

See the flyer for the full details.