Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases.
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A systematic review of approaches for engaging patients for research on rare diseasesCan the EVIDEM Framework Tackle Issues Raised by Evaluating Treatments for Rare Diseases: Analysis of Issues and Policies, and Context-Specific Adaptation.The supportive care needs of parents with a child with a rare disease: results of an online survey.The involvement of patient organisations in rare disease research: a mixed methods study in Australia.Survey of healthcare experiences of Australian adults living with rare diseasesDirections for new developments on statistical design and analysis of small population group trials3-Dimensional Facial Analysis-Facing Precision Public Health.Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model.Rare disease registries: a call to action.Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review.Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health Framework.Advancing Pain Education in Canadian Physiotherapy Programmes: Results of a Consensus-Generating Workshop.
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P2860
Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases.
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2012 nî lūn-bûn
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2012年の論文
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2012年学术文章
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2012年学术文章
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2012年学术文章
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2012年学术文章
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2012年学术文章
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2012年學術文章
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2012年學術文章
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name
Key outcomes from stakeholder ...... tional plan for rare diseases.
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Key outcomes from stakeholder ...... tional plan for rare diseases.
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type
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Key outcomes from stakeholder ...... tional plan for rare diseases.
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Key outcomes from stakeholder ...... tional plan for rare diseases.
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Key outcomes from stakeholder ...... tional plan for rare diseases.
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Key outcomes from stakeholder ...... tional plan for rare diseases.
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P2093
P2860
P356
P1476
Key outcomes from stakeholder ...... tional plan for rare diseases.
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P2093
Caron Molster
Emma Hammond
Hugh Dawkins
Leanne Youngs
National Rare Diseases Coordinating Committee
National Rare Diseases Working Group
P2860
P2888
P356
10.1186/1750-1172-7-50
P577
2012-08-10T00:00:00Z
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P6179
1010626842