Jenna at the 2016 WFH Congress
I was given the opportunity to attend and speak at this year’s World Congress in Orlando. This was my second Congress, after attending ours in Melbourne in 2014. In this post, I’m going to share with you a few parts of this year’s Congress I enjoyed the most:
WFH Youth Leadership Advisory Committee Meeting (YLAC) & Youth Session
I was invited to speak at the youth session, held just before the Opening Ceremony. The session was about youth transitions & advocacy. I shared my story of transition from pre-diagnosis to diagnosis (as a young person diagnosed after childhood), and I very much enjoyed sharing my story. In this session, those in the room also heard stories from fellow youth leaders from countries such as Egypt, the United States and Mexico about how they manage their bleeding disorder personally, as well as the work they do as advocates in their countries. I learned a lot from fellow youth leaders and advocates in this session - if you are interested in being a leader and advocate in the community, I can definitely recommend being involved at the international level. There is a lot to learn from the rest of the world, and they’re pretty cool people too.
The second formal activity I was involved with was a committee meeting for the YLAC that I am part of. It was fantastic getting to have an in-person meeting. We talked about an upcoming WFH Youth Development and Leadership program and the Young Voices website, where young people all around the world can share the fun, interesting, useful or even challenging things they experience as a person with a bleeding disorder.
Focus on Treatment in the Developing World
A theme that came through in many sessions this year at Congress (including the youth session) is the gap in availability in treatment and care in developing countries around the world. In our corner of the planet, that includes countries like India, Bangladesh & Indonesia. For most patients in these countries, access to factor concentrates, and even older products like cryoprecipitate and fresh frozen plasma, is not possible or is severely restricted by cost. These patients often get their first access to prophylaxis at events like World Congress through the on-site treatment room and product that has been donated, then have to return home with little or no product. Hearing from other young people in the session I spoke in very strongly highlighted to me how lucky I am to have been born in Australia with access to safe and free treatment. A WFH priority is to close the gap between those who have treatment and those who have none.
I can recommend a video series produced by WFH & a fellow youth advocate, Patrick James Lynch - http://www.wfh.org/en/treatmentforall
Focus on Women with Bleeding Disorders
Perhaps my favourite session at the WFH 2016 Orlando Congress (after the one I spoke in!) was entitled: Bleeding & Women - Time for a Paradigm Shift. There is currently a strong understanding around the world that women with bleeding disorders is under-researched and under-supported, but there is a lot of support for change. There was an exhibition booth at the Congress exclusively run by women, and a keen interest in perspectives from females with bleeding disorders - I personally had conversations with other youth with bleeding disorders, industry and NMOs that show that now is the time for change. I encourage females to get involved in the community and share your experiences - and as someone who has spoken at in a Congress session about my female-specific bleeding issues, I can also attest to the fact that you will be supported to be involved.
Next up, Glasgow!
The Scots introduced themselves in both the Exhibition Hall and at the final dinner - with scotch, kilts & bagpipes! A World Congress is a wonderful experience for a person with a bleeding disorder. Attending an overseas Congress takes quite a bit of planning but is something I recommend.