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Challenges of transition to adult health services for patients with rare diseases
Yvonne A Zurynski and Elizabeth J Elliott
Med J Aust 2013; 198 (11): 575-576.
Yvonne A Zurynski, BAppSc, MAppSc, PhD, Associate Professor,1 and Deputy Director2
Elizabeth J Elliott, MD, MPhil, FRACP, Professor,1 and Director2
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Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 2003; 33: 309-311.
Royal Australasian College of Physicians. Paediatrics and Child Health. Policies. Transition to adult health services for adolescents with chronic conditions. Sydney: RACP, no date. http://www.racp.edu.au/index.cfm?objectid=39396AC9-E30B-7941-0FD53740FF78DBC8 (accessed Mar 2013).
Lister S, Brodie L. Transition Care Workforce Project. Final report: November 2008. Transition Care Network, NSW Agency for Clinical Innovation. http://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0003/153615/transition_care_workforce_report.pdf (accessed Apr 2013).
Sloman F. Transfer of young adults with complex medical needs project. Royal Children’s Hospital. Melbourne: RCH, 2005. http://www.health.vic.gov.au/subacute/transfer_young.pdf (accessed Mar 2013).
Kirby T. Australia makes up for lost time on rare diseases. Lancet 2012; 379: 1689-1690.
Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis 2013; 8: 22.
Australian Paediatric Surveillance Unit. Young people living with rare disease call for better health services and peer support. Sydney: APSU, 2013. http://www.apsu.org.au/home/news (accessed Mar 2013).
Olauson A. The Agrenska centre: a socioeconomic case study of rare diseases. Pharmacoeconomics 2002; 20 Suppl 3: 73-75.
General Practice NSW. 10 minute update. Projects and services. Introducing the Trapeze Adolescent Service. Sydney: GPNSW, 2013. http://www.gpnsw.com.au /newsletters/10-minute-update/10-minute-update-issue-14.html (accessed May 2013).
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