Events, News

2024 Rare Voices Australia Rare Disease Day Parliamentary Event

The Rare Voices Australia 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February). Hosted by the Parliamentary Friends of Rare Diseases, the event theme was Progress Beyond Policy.

While ITP Australia and New Zealand were travelling throughout New Zealand, the event was the launching pad for Rare Disease Centres of Expertise and Australia’s first National Recommendations for Rare Disease Health Care (the Recommendations), which was launched on Rare Disease Day. The recommendations were written to help health professionals provide quality care for people living with rare diseases, including those who have been diagnosed with them and those who have not yet received a diagnosis.

The Recommendations may be helpful for:

  • Health professionals – to provide better care for people living with rare disease
  • People living with rare disease – to help in partnering with their health care team to plan the type of health care that works best for them
  • Policy makers – to help shape health care policy relating to rare disease

The Importance of Rare Disease Day

Rare Disease Day is an opportunity to celebrate all we have achieved as a sector and consider how we can continue building on the momentum already generated to accelerate progress beyond policy while maintaining a person-centred approach as the ongoing implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) continues.

Implementing the Action Plan requires ongoing multipartisan collaboration and support, and RVA looks forward to continuing to advocate for the best outcomes for Australians living with rare diseases.

Source: Rare Voices Australia