What was your favourite session in the Conference?
The gene therapy session because it showed that we are on our way to a lot better treatment or a kind of cure.
The youth discussion as it allowed us as a community to raise some questions and answer them from all viewpoints. This allowed us to fully understand what the youth, parents and health care professions think and know.
Evolving concepts in pain management – pain is something almost all haemophiliacs suffer. Understanding the root cause of this and the way that we perceive this was really valuable in evaluating my own situation.
What did you enjoy most about the Conference?
Catching up with certain people I haven't seen in a long time, being from different states I rarely get to see them.
I very much enjoyed the networking with other fellow bleeders and to get a chance to interact with the doctors and pharmaceutical companies.
Sharing stories with other people was the highlight. I haven’t met another hemo since I was really young. To talk to others who understand exactly what you're going though is always nice.
What message would you give other young people about the Conference?
Advice I'd give is to get behind your local foundation for the chance to see bleeding disorders on a national level at conferences. People with bleeding disorders have a lot of community support and if you're struggling, you're bound to find someone who can help you out.
I greatly encourage all the youth to get involved and make the most out of all the things the HFA do for our community. Connect with other youth and make the whole foundation grow as a whole.
Just go! If you're at all interested about learning about something that is a big part of your life, this is a great place to grow that knowledge.
What did you find most interesting about the Youth Myth Busting session?
What I found interesting was having the audience interact with the panel and share their thoughts and experiences.
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