Australians living with rare diseases will have access to a new helpline and telehealth nurses thanks to the Albanese Government delivering on an election commitment.
Following an open competitive process, the Government has delivered a $2.48 million grant to Rare Voices Australia to deliver the new program.
The Navigator Project service will be available to all Australians with rare and complex diseases who need help to navigate the health system.
People living with rare and complex diseases often don’t have defined care pathways, and some individuals and their families and carers don’t feel confident to self-manage their condition.
This can lead to adverse outcomes, poor mental health and wellbeing, and disengagement from the health system.
While the focus of the program is on rare disease, the Government recognises that people living with other complex conditions share common challenges and will benefit from this service.
The Navigator Project has three core components:
- RARE Helpline
- Telehealth nurse service navigation trial sites
- Engagement with three consumer-led rare and complex disease organisations.
An interim RARE Helpline will be available from next month, and the program is expected to be fully operational in the second half of 2023.
Quotes attributable to Minister Butler:
“A rare disease diagnosis brings with it great challenges for some two million Australians. Navigating the health system should not be one of them.
“Being diagnosed with a serious medical condition is daunting and understanding what your next steps are is often confusing. It’s particularly daunting when the condition is rare and there are fewer treatment options.
“It can be difficult to find the verified information, resources and services people with rare and complex diseases need, which is where the RARE helpline and access to telehealth nurses will really make a difference.”
Quotes attributable to Nicole Millis, CEO Rare Voices Australia:
“Rare Voices Australia (RVA) is pleased to be the lead consortium partner on The Navigator Project, which has been named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant.
“The funding will support the estimated two million Australians living with a rare disease to navigate the health system, including via the assistance of telehealth nurses.
“The Navigator Project will deliver a much-needed navigation service, and build service navigation capacity within both clinical and consumer-led services.
“With its strong focus on data collection and evaluation, the Navigator Project increases the potential for system improvement.”