Funding supports Australians living with a rare disease

Photo credit: Cedric Fauntleroy/ Pexels


Associate Professor Yvonne Zurynski, from the Australian Institute of Health Innovation, is part of a team awarded $1.9 million for a project supporting the almost two million Australians living with one of 7000 rare diseases.

Led by the University of New South Wales (UNSW), the Rare Awareness, Education, Support and Training (RArEST) project will develop and deliver rare disease awareness resources, education, support, and training with a focus on mental health, and social and emotional wellbeing.

The funding is part of the $3.3 million announced by the federal Minister for Health and Aged Care, Greg Hunt.

Associate Professor Zurynski will lead Stream 3 of the RAReST program whilst working closely with Rare Voices Australia CEO Nicole Millis, and the RAReST project investigators Dr Elizabeth Palmer and Professor Adam Jaffe from UNSW and Professor Gareth Baynam for the University of Western Australia.

Building capacity in meaningful consumer engagement and codesign throughout the Rare Disease sector will be the focus for Associate Professor Zurynski.

“Having contributed to the development of the National Strategic Action Plan for Rare Disease it is particularly exciting to have the opportunity to take action on implementing the plan.”

Please read more here from UNSW Newsroom:

Dr Elizabeth Emma Palmer, Professor Adam Jaffé and Associate Professor Michelle Farrar from the School of Women’s and Children’s Health at UNSW Medicine & Health will lead the project, in collaboration with Rare Voices Australia, Professor Gareth Baynam from the University of Western Australia and Associate Professor Yvonne Zurynski from Macquarie University.

The National Strategic Action Plan for Rare Diseases (the Action Plan) highlights an urgent need to tackle the poor health and psychosocial outcomes for Australians living with a rare disease. This grant is a fantastic opportunity to make a real difference by working with the rare disease community to provide acceptable solutions to improve the diagnosis, care and support for impacted Australians,” Dr Palmer said.

Support for individuals living with rare disease

The RArEST project aims to improve care and support services for people living with a rare disease, their families and carers, and the rare disease health and support workforce. Due to the high levels of depression and mental health issues among these groups, the support services will be designed to focus on mental health and emotional wellbeing.

Support services will also be developed for priority populations outlined in the Action Plan including Aboriginal and Torres Strait Islander people; people living in regional, rural and remote areas; people from culturally and linguistically diverse (CALD) backgrounds; and people experiencing socio-economic disadvantage.

“A rare disease affects every facet of a person’s life, not just their health. This grant will focus on developing care and support services that are sustainable and person and family centred,” Dr Palmer said.

Health professional education and training

The project will deliver rare disease awareness and education programs to health professionals and improve access to them. The programs will encourage health professionals to provide timely care and support that is coordinated and appropriate for all Australians living with a rare disease.

“Many doctors feel unprepared to provide the specialist care that their patients with rare diseases need. RArEST will focus on providing clinicians, including GPs, with the skills, knowledge and confidence to work in partnership with their rare disease patients, to deliver world-class rare disease care,” Dr Palmer said.

The RArEST project will also deliver national rare disease awareness and education activities, including raising awareness of prevention measures for non-hereditary rare diseases, such as cancers, infections and autoimmune disorders.

For media inquiries, please contact Stefanie Menezes E: [email protected]

This article was reproduced from the Australian Institute of Health Innovation. Read the original article here.

Subscribe to our newsletter