No 210 June 2020
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Do you have haemophilia or carrry the gene?
Have you completed the PROBE (Patient Reported Outcomes Burdens and Experiences) questionnaire?
The survey is available at https://tinyurl.com/PROBE-Australia.
Or ask HFA or your Foundation for a print copy.
Your responses can help to build strong evidence about the impact of haemophilia.
PROBE is a multinational study where Australians can give evidence about living with haemophilia and the impact of different sorts of treatment on their bleeds, pain and quality of life.
HFA will use the data to better understand current issues - and this data is crucial for our treatment advocacy.
You are invited to complete the survey if you are an adult Australian and:
- you are an adult with haemophilia or carry the gene
- or you are an adult and DON'T have a bleeding disorder (as a comparison group)
Consider being involved to help us with this important study!
For more information about PROBE in Australia, visit www.haemophilia.org.au/research/probe-study
Or contact Suzanne at HFA:
T: 1800 807 173
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Date last reviewed: 19 June 2020