Australian children living with rare diseases: health service use and barriers to accessing care.

"Declarations Ethical approvalEthical approval was obtained from The Children’s Hospital at Westmead (Sydney, Australia) Human Research Ethics Committee (approval number: 10/CHW/5). Participants gave consent by responding to the family survey used in this study. Conflict of interestNo financial or non-financial benefits have been received or will be received from any party related directly or indirectly to the subject of this article. The authors have no conflict of interest to declare. Conflict of interest No financial or non-financial benefits have been received or will be received from any party related directly or indirectly to the subject of this article. The authors have no conflict of interest to declare."

"Funding This research was supported by an Australian Research Council Linkage Project grant scheme (No. LP110200277). The funding sources had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication. During the period of the research, ZY held a Fellowship from the Sydney Medical School Foundation and LH was funded by a National Health and Medical Research Council of Australia Senior Research Fellowship (No. 1117105). EJE was supported by a National Health and Medical Research Council of Australia Practitioner Fellowship (No. 1021480) and a Medical Research Futures Fund Next Generation Fellowship (No. 1135959). CJ’s Chair in Genomic Medicine is supported by The Royal Children’s Hospital Foundation."