Western Australians living with rare diseases will receive new and improved access to support, education and training under two new programs.
WA Health’s Rare Diseases Unit is working with community partners to deliver these programs.
The first is a pilot program that aims to support people in navigating services across the health system, as well as other systems such as education and the National Disability Insurance Scheme (NDIS).
The second program will provide a range of training opportunities for peer support groups in the rare and genetic diseases sector.
Both programs aim to make it easier for patients to access services and supports such as mental health care and increased advocacy and research into the diseases.
This news coincides with international 2022 Rare Disease Day on February 28, which raises awareness about the impact they have on people’s lives.
Manager of the Rare Diseases Unit, Caron Molster said the goal of this new program was for Western Australians living with a neuromuscular disease to pinpoint the help they need, as easily as possible.
“For the pilot system navigation program, we are proud to be working with Muscular Dystrophy WA towards improved services for people living with rare neuromuscular disorders,” Ms Molster said.
“Rare neuromuscular diseases include muscular dystrophies, Charcot-Marie-Tooth disease, myasthenia gravis, spinal muscular atrophy and Friedreich’s ataxia.
“People living with rare diseases deserve to feel understood and have greater knowledge of the services and support they need, along with a clear pathway on how to access them.”
More information about Rare Disease Day can be found here.
Fact file
- There are more than 7,000 known rare diseases
- Rare diseases affect approximately 5.9 per cent of the population
- That equates to one in 17 people having a rare disease, which is 1.2 million Australians and 157,000 Western Australians
- In Australia, among adults living with a rare disease (Source: Molster et al. 2016):
- 67 per cent saw three or more doctors to get a diagnosis, with 12 per cent seeing 11 or more doctors
- 30 per cent waited five or more years for a diagnosis
- 46 per cent had received at least one incorrect diagnosis
- 26 per cent thought they had received enough information at the time of diagnosis
(ENDS)
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