Rare diseases research and policy in Australia: On the journey to equitable care

Author:

Bhattacharya Kaustuv12ORCID,Millis Nicole3,Jaffe Adam4,Zurynski Yvonne5ORCID

Affiliation:

1. Faculty of Medicine and Health University of Sydney Sydney New South Wales Australia

2. Genetic Metabolic Disorders Service, Sydney Children's Hospitals' Network Sydney New South Wales Australia

3. Rare Voices Australia Melbourne Victoria Australia

4. School of Women's and Children's Health University of NSW Sydney New South Wales Australia

5. Australian Institute of Health Innovation and the NHMRC Partnership Centre for Health System Sustainability Macquarie University Sydney New South Wales Australia

Publisher

Wiley

Subject

Pediatrics, Perinatology, and Child Health

Reference22 articles.

1. Call for a national plan for rare diseases

2. ZurynskiY.What is a rare disease? It's not as simple as it sounds.The Conversation2020. Available from:https://theconversation.com/what-is-a-rare-disease-its-not-as-simple-as-it-sounds-132251[accessed 18 December 2020].

3. Australian Government.National Strategic Action Plan for Rare Disease. 2020. Available from:https://www.health.gov.au/sites/default/files/documents/2020/03/national‐strategic‐action‐plan‐for‐rare‐diseases.pdf[accessed 18 December 2020].

4. Rare Voices Australia.RVA'S Focus. 2020. Available from:https://www.rarevoices.org.au/page/7/our-purpose[accessed 18 December 2020].

5. Initiating an undiagnosed diseases program in the Western Australian public health system

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