Call for a national plan for rare diseases.

Abstract:

:Australia requires a national plan, similar to plans developed internationally, to address the impacts of rare diseases on individuals, the community and health services. Rare diseases often present in childhood, many are chronic, some life threatening and others associated with significant disability. However, diagnosis is often delayed, because of lack of knowledge and experience of health professionals and uncertainty about where to refer. Specialised health services are frequently lacking and specific therapies are often not available, partly because of lack of research funding directed towards rare diseases. A national plan would facilitate a coordinated response to service development, carer support, and health professional and community education, and would promote research and advocacy for affected children and their families.

authors

Jaffe A,Zurynski Y,Beville L,Elliott E

doi

10.1111/j.1440-1754.2009.01608.x

subject

Has Abstract

pub_date

2010-01-01 00:00:00

pages

2-4

issue

1-2

eissn

1034-4810

issn

1440-1754

pii

JPC1608

journal_volume

46

pub_type

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