Rare disease registries: a call to action-Reference-Cited by-同舟云学术

Rare disease registries: a call to action

Published:2017-09 Issue:9 Volume:47 Page:1075-1079
ISSN:1444-0903
Container-title:Internal Medicine Journal
language:en
Short-container-title:Intern Med J

Author:

Lacaze Paul¹^ORCID,Millis Nicole²,Fookes Megan²,Zurynski Yvonne³⁴,Jaffe Adam⁵⁶,Bellgard Matthew⁷,Winship Ingrid⁸⁹,McNeil John¹,Bittles Alan H.⁷¹⁰

Affiliation:

1. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine; Monash University; Melbourne Victoria Australia

2. Rare Voices Australia Ltd; Melbourne Victoria Australia

3. Paediatrics and Child Health; Children's Hospital; Sydney New South Wales Australia

4. Australian Paediatric Surveillance Unit; The University of Sydney; Sydney New South Wales Australia

5. Discipline of Paediatrics, School of Women's and Children's Health, Faculty of Medicine; University of New South Wales; Sydney New South Wales Australia

6. Respiratory Medicine; Sydney Children's Hospital; Sydney New South Wales Australia

7. Centre for Comparative Genomics (CCG); Murdoch University; Perth Western Australia Australia

8. Genetic Medicine and Family Cancer Clinic; Royal Melbourne Hospital; Melbourne Victoria Australia

9. Department of Medicine; University of Melbourne, Royal Melbourne Hospital; Melbourne Victoria Australia

10. School of Medical and Health Sciences; Edith Cowan University; Perth Western Australia Australia

Publisher

Wiley

Subject

Internal Medicine

Link

http://onlinelibrary.wiley.com/wol1/doi/10.1111/imj.13528/fullpdf

Reference24 articles.

1. Call for a national plan for rare diseases;Jaffe;J Paediatr Child Health,2010

2. Rare childhood diseases: how should we respond?;Zurynski;Arch Dis Child,2008

3. 2016 http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf

4. Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases;Molster;Orphanet J Rare Dis,2012

5. Australia makes up for lost time on rare diseases;Kirby;Lancet,2012

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