Gavin Finkelstein is President, Haemophilia Foundation Australia
When I presented the President’s report at the recent HFA Annual General Meeting, I commented that I thought 2014 had been one of our busiest years.
Our staff and volunteers work so hard every year that it is really hard to say that one has been busier than any other!
But we did have the launch of MyABDR and the 2014 World Congress at the start of the year and at this end of the year we have been considering some major changes to our Constitution. These are significant activities! Each of them could only occur with a lot of work in the background and very careful planning. None of this type of work happens overnight, but it still seems a lot to have crammed into one year and I want to thank our staff and volunteers for this.
While the changes to our Constitution are yet to be ratified by the government regulatory authorities, they come from a resolution at the 2012 Council Meeting to replace the existing dual governance structure of our Council and Executive Board with a more efficient, agile and fully representative structure.
There will no longer be a separate Executive Board. All State/Territory Foundations will have one representative on Council and Council will meet at least three times each year. This is to enable quicker decision making and more timely responses on policy issues. We hope this will also improve formal communication opportunities between our member Foundations. There will be a process as before, to make sure communities without formal representation, such as South Australia and Northern Territory, can also have a say. We look forward to the time when we have the whole country fully and properly represented.
Another major decision at Council was that HFA will work with its member Foundations redevelop the HFA and state/territory websites so they can sit together seamlessly to provide consistent, accurate and reliable education resources and information about our programs and activities. Each Foundation will have its own website and web address and retain control over updating its memberships, activities and other information, but this means the websites will be able to share some sections, such as educational information, or news items. There will be new underlying web site structure which will also mean issues like web site accessibility – which are important for users, but complex for State and Territory Foundations – are taken care of nationally.
There is great interest in the longer acting clotting factor products that have been registered in Australia and for other products at the stage of human trials. We are at an interesting time and I look forward to hearing the views from our community members about the different types of products that could become available.
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