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Information Partner Newsletter Spring 2023

Visitors from 40,000 websites put trust in healthdirect
healthdirect helpline offers SMS links to Information Partner resources
Partner in focus: Arabella Gibson, CEO, Gidget Foundation Australia
Visualising heart disease to reveal risk improves patient adherence
Rare Awareness Rare Education (RARE) Portal for rare diseases
ReachOut Australia is helping First Nations young people care for their mental health
youngpainhealth: a digital platform supporting and co-designed by young people with chronic musculoskeletal pain
New guidance on the law supports appropriate use of consultation recording in healthcare

Rare Awareness Rare Education (RARE) Portal for rare diseases

Published: 19 August 2023

Article submitted by: Rare Voices Australia (Opens in new tab)

Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease, is leading the collaborative development of the RARE Portal (Opens in new tab) for rare diseases. The RARE Portal is one of the key initiatives of the Australian Government’s National Strategic Action Plan (Opens in new tab) for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.

The RARE Portal is continuously updated, with new information added regularly. In addition to being customised for the Australian context, it also seeks to highlight the gaps and strengths across the rare disease sector to guide the way forward for evidence-based rare disease policy, research and innovation. Development of the RARE Portal has been funded by the Australian Government.

RARE Portal

Last reviewed: September 2023

Information Partner Newsletter Spring 2023

Visitors from 40,000 websites put trust in healthdirect
healthdirect helpline offers SMS links to Information Partner resources
Partner in focus: Arabella Gibson, CEO, Gidget Foundation Australia
Visualising heart disease to reveal risk improves patient adherence
Rare Awareness Rare Education (RARE) Portal for rare diseases
ReachOut Australia is helping First Nations young people care for their mental health
youngpainhealth: a digital platform supporting and co-designed by young people with chronic musculoskeletal pain
New guidance on the law supports appropriate use of consultation recording in healthcare

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