Advocacy

HeartKids is the national peak congenital heart disease organisation and the voice of people impacted by the disease.

As a leading consumer health advocate organisation we support patients and their families by advocating on their individual and collective behalf to Australian, State and Territory Governments, health and hospital networks, and other agencies that play a part in your congenital  heart disease journey. 

In 2018 HeartKids campaigned for and achieved:

  • A National Childhood Heart Disease Action Plan funded by the Australia Government and now in development.  You can stay up to date with the Action Plan's progress by registering your interest here
  • Increased investment in research by Government and others.  In February 2018 the Minister for Health the Hon. Greg Hunt pledged $15 million in research funding and announced the Conquering Childhood Heart Disease Research Mission.  This is a very exciting announcement and the most significant single investment in childhood heart disease research in HeartKids 40 year history; and
  • To ensure patients and their families/ carers gain equitable access to government assistance and support.  HeartKids continues to advocate to the Australian Government to ensure fair, equitable and transparent access to the National Disability Insurance Scheme (NDIS).  Currently families and adults living with CHD attempting to access NDIS support are faced with a range of conflicting information regarding eligibility for support.   HeartKids continues to lobby the government to clarify this confusion.

Many of our advocacy priorities are based on extensive ongoing consultation with families, heart kids of all ages, and health professionals.  Much of the evidence used to support our submissions to Government emanates from the 2011 Congenital Heart Disease White Paper commissioned by HeartKids and the Cardiac Society of Australia and New Zealand. Download the White Paper (PDF 466.8KB)

To learn more about our programs, keep up to date on new research, upcoming events and related information on CHD and HeartKids sign up to our newsletter here