Funding supports Australians living with rare disease

UNSW Sydney researchers have been awarded $1.9 million for a project that will develop and deliver rare disease resources, education and training.

UNSW has been awarded $1.9 million in federal government funding for the Rare Awareness, Education, Support and Training (RArEST) project. The 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 federal Minister for Health and Aged Care, Greg Hunt, to support the approximate two million Australians living with one of 7000 rare diseases.

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.

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