HFSA update

Sharon Caris

Sharon Caris is Executive Director, Haemophilia Foundation Australia

What do South Australians with bleeding disorders want from HFA?

We have reported our 2016 Community Survey from a national point of view, but we are currently analysing the responses of South Australians who completed the Survey to understand their preferences.

We received 29 South Australian responses, which represents about 15% of all, with men and women equally distributed. 75% of all said they lived in Adelaide. Interestingly 48% were aged between the ages of 31-54 and a further 47% were older than 55. Over half said they had a bleeding disorder, and a third said they were carriers of the haemophilia or VWD gene. Over a third were either a parent of a child with a bleeding disorder or a family member or carer.

There are some very helpful suggestions amongst the responses including whether there is more HFA can do to connect with people in country South Australia and recommendations for an annual social gathering for the community. The responses about the type of information people would like to receive about bleeding disorders were valuable – some people were keen for more information about parenting, sport and exercise, growing older, and treatment issues relating to inhibitors and treatment for von Willebrand disorder and new treatments for haemophilia.

Thank you for your participation, as it will be very helpful as we consider the next steps with our South Australian volunteers and health professionals.