WA praises plan for national strategy on rare diseases

  • National plan follows success of WA’s rare diseases strategy
  • Set to strengthen co-ordination of services of rare diseases community

The Western Australian Government has welcomed today’s announcement by the Commonwealth Government of plans to develop a National Rare Diseases Framework, describing the move as an important development for Australia’s rare diseases community.

The Commonwealth’s announcement, made in Melbourne at a Rare Diseases Summit, follows the success of Western Australia’s WA Rare Diseases Strategic Framework 2015-18 which, when launched three years ago, became the first of its kind in the southern hemisphere.

The WA framework’s more than 50 initiatives led to significant improvements in the co-ordination of services for the rare diseases community. Chief among these were:

  • The establishment of the WA Undiagnosed Diseases Program, a highly successful program dedicated to finding diagnosis for people with baffling rare conditions;
  • Improvements to the way Aboriginal people living with rare diseases can access care, including access to genetic services;
  • Establishment of the nation’s first genetic counselling position dedicated to Aboriginal people; and
  • Incorporation of rare disease diagnostic codes into the diagnostic records of WA Health services and registers including the WA Register of Developmental Abnormalities, Genetic Services of Western Australia and PathWest, a move that should enhance understanding of the prevalence and impact of rare diseases.

Rare diseases are chronically debilitating disorders that affect fewer than one in 2,000 people but are estimated to collectively affect about six to eight per cent of Australians.

In Western Australia about 190,000 people live with a rare disease – about a third of them children.

Because of their individual rareness, these diseases can be difficult to diagnose which means some people wait years for a diagnosis.

As stated by Health Minister Roger Cook:

“Western Australia has been at the forefront of working to improve the lives of people with a rare disease and continues to explore new and innovative ways of building on this success.

“It is encouraging to see that the important foundations we have laid are now set to be adopted at a national level, potentially strengthening the co-ordination of rare disease services across Australia.”

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