From the President

GAVIN FINKELSTEIN

Gavin Finkelstein is President, Haemophilia Foundation Australia

This edition of National Haemophilia will arrive in your letter box or inbox a few weeks before our national conference to be held in Melbourne. The conference program covers a wide range of topics, and issues that we think are of interest to people affected by bleeding disorders. 

I have been to most conferences over the last 15- 20 years and I always think they are a great chance for people with bleeding disorders to meet up and share their own experiences and to learn from each other. The social aspect is really enjoyable, especially when meeting up with people you haven’t seen for a while. I know in particular, lots of younger people in our community don’t get the chance to meet others with bleeding disorders, nor do they have the chance to discuss some of the difficulties of living with a bleeding disorder because they are really busy or just don’t come across others like themselves.

The other great thing about conferences is that we usually have people from every age and life stage in the audience and as speakers at the conference. Ours is a community of experts and our speakers are experts – either because they are making a good fist of living with a bleeding disorder that impacts every part of their lives, or because they have had many years’ experience of working with or treating people with bleeding disorders.

So, there is something for everyone – for health professionals to learn more about what it’s like to live with a bleeding disorder, or about new treatments, and for people with a bleeding disorder and their families and carers who are keen to find out the latest information and hear about others’ experience.

Younger parents like to meet others like themselves, because they often feel really alone when faced with a child newly diagnosed with a bleeding disorder. But they also like to meet people who have come through the early years of having a baby with a bleeding disorder and see how other people adjust and in turn become the experts following their day to day experiences, just as they will do! They also like to see the young men and women in our community who have grown up and are now leading active, independent and fulfilling lives. Some of these young people have participated in our youth leadership programs and can share their experiences.

For some in our community, there will be very new information about treatment and care – we are in a fast moving period as many new treatments are becoming available, and this is leading us to think about new approaches to treatment and what we can and should expect from our treatment. We have been talking to women and girls in our community, and as well as producing print and online education resources, we have invited speakers for conference sessions that are geared to some of the complex issues that arise for women and girls. Other sessions will focus on fitness and exercise and others will focus on some of the challenges faced by older members of our community.

In many ways, our conference is very representative of our community. It includes the many parts – it identifies the challenges, offers solutions, and helps us make connections that enable us to get on with our lives.

We still have some limited funding available if you wish to attend and need some help.  Please contact Sharon Caris at HFA for information about funding scaris@haemophilia.org.au or 03 98857800.