No 193 March 2016
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From the President
Gavin Finkelstein is President, Haemophilia Foundation Australia
The 2016 WFH World Congress will be held in Orlando, USA July 24 – 28, 2016.
For many in the Australian bleeding disorders community, the 2014 Congress in Melbourne was their first taste of this very important international meeting. It was extra special that the meeting was in Australia as it became accessible to so many more Australians - 400 amongst the 4000 delegates!
But two years has passed and the World Federation of Hemophilia is working with our friends from the National Hemophilia Foundation (NHF) in the USA towards what is promised to be a larger meeting than ever before. We look forward to a good meeting – and the opportunity to hear from leading scientific, medical and psychosocial experts, as well as patient community members who will share their experiences.
COMMUNITY VOICE IN RESEARCH
The community’s voice is critical.
It is also great to see that there is a worldwide effort to build the voice of the community into research. It is critical that research about treatment includes measures of the outcomes of treatment from the patient’s point of view, and that of his or her family. For example, the right type of evidence needs to be collected to demonstrate the value of new treatment therapies such as the longer acting clotting factor products which are becoming available around the world.
I have no doubt there will be strong discussions about published clinical trial and other research data at the Congress. This is timely for HFA as we are currently reviewing the HFA Treatment Policy to include the community’s position about longer acting factors. But what is most important to us as a community organisation is to make sure that those issues relating to longer acting factors that are priorities for our community members are reflected in our Treatment Policy. We will continue to work on this with our community members; and we look forward to seeing what evidence-based data to support this arises at the Congress.
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Date last reviewed: 15 March 2016