Have your say in a national rare disease project

Did you know that an estimated 2 million Australians live with a rare disease? Despite variation among different rare diseases, people living with a rare disease face common challenges including a lack of awareness and timely and accurate diagnosis as highlighted in the National Strategic Action Plan for Rare Diseases.

The Rare Disease Awareness, Education, Support, and Training (RArEST) Project is a partnership between the UNSW, Rare Voices Australia, The University of Western Australia, and Macquarie University.

The RArEST team is developing a range of resources to support health care professionals in coordinating comprehensive, family-centred care for chronic and complex patients with rare diseases and their families. In particular, they will soon be launching a rare disease ProjectECHO—a free real-time, case-based virtual community of rare disease practice to support multidisciplinary health professionals as well as Rare Disease 101 Australia, an e-learning module.

To enable the RArEST team to deliver resources that are most helpful for health professionals, they want to hear from you about your experiences delivering rare disease care and any learning needs. You are invited to complete a short anonymous survey: RArEST health professionals needs assessment (qualtrics.com)

If you have any questions about the survey, please contact the RArEST team on rarest@unsw.edu.au.