Rare disease in spotlight with National Strategic Action Plan

26 Feb 2020

The Hon Greg Hunt, Federal Minister for Health, has announced $3.3 million to implement the first National Strategic Action Plan for Rare Diseases. The announcement was made at Parliament House in Canberra at a ceremony attended by representatives from the rare disease community including our Executive Director, Megan Donnell.

The Action Plan aims to increase awareness and promote earlier, more accurate diagnosis and treatment for around two million Australians suffering from rare diseases.

 The Action Plan is comprised of three pillars:

  • Awareness and education.
  • Care and support.
  • Research and data.

The National Strategic Action Plan for Rare Diseases, created by the peak body Rare Voices Australia, describes work that needs to be done to ensure we have the right health professionals working together to provide care for people living with Sanfilippo Syndrome and other rare diseases.

Minister Hunt announced funding for several initiatives in the plan including for health professional education. However the launch of the action plan does not mean any immediate changes for research, diagnosis, treatment or support for Australians with rare diseases.

While each rare disease affects less than five in every 10,000 people, there are more than 7,000 currently known rare diseases. Approximately 80 percent of rare diseases are of genetic origin. Others include rare cancers, infections and autoimmune disorders.

Today’s announcement was timed to celebrate International Rare Disease Day which this year is being held on the ‘rare’ day of 29th February.

Read the Action Plan in full here