Gavin introducing the opening plenary
What were your overall impressions of the Conference?
Considering we haven’t had a face-to-face Conference in quite a few years, it was noticeable how excited people were just to get together with fellow members of the community and spend time discussing things – but also having the education and catching up with what the advances are when it comes to treatment for bleeding disorders. Having these twofold education and interpersonal aspects that we have missed out on over the last few years made it a brilliant conference.
It’s so important to have the time to sit down and talk with each other about these things. You don’t discuss your haemophilia or your bleeding disorder issues with your friends, but you can speak about them freely with the community because there is empathy and understanding and everyone goes through similar experiences together. Having this kind of environment to discuss your issues with your peers – between sessions or over a meal break – I find it quite invigorating. You build up friendships over time and it’s great to catch up.
The education is just so important too, because things are moving very quickly and we need to keep up with what’s happening and where it might go.
Were there any sessions that stood out for you?
The gene therapy session really stood out for me because there is such an emphasis on gene therapy.
Dr Glenn Pierce was an amazing speaker. He makes complicated science easy to understand and he is meticulous in working through the information and the messages. Gene therapy is incredibly complex, but he explains it so that everyone has a realistic understanding of the situation.
I thought it was important that there was a reality check that gene therapy, exciting as it is, is not the answer for everyone. For example, not everyone is eligible for the current gene therapy because some people have antibodies to the vectors that are used. Gene therapy isn’t the only emerging therapy that is out there. There are other products that are fantastic compared to treatments used in the past. It’s about using a suite of products that are available and for patients to work with doctors to get the best treatment outcome.
What was your take home message from the conference?
It reinforced the need to have the Conference. It’s a really worthwhile exercise to bring the doctors and the other health professionals together as well as the community. The health professionals have their own meetings the day before the Conference and this builds strong national groups among the disciplines. And individuals in the community inspire you – it’s a great opportunity to get together with them and catch up. We have done so much online but meeting face-to-face is very valuable.
We need to know what’s happening and to think about the services that are provided and what we might need in the future. The holistic aspect of the Conference is very important. We hear about what’s new, share our experiences and ideas and have an opportunity to think outside the box. It makes such a difference to comprehensive care and innovation going forward.
Haemophilia health professionals reflected on their experience at the conference.
Alex Klever, Clinical Nurse Consultant, Queensland Haemophilia Centre
Natalie Karlovic, Physiotherapist – Oncology, Haemophilia and Palliative Care, Children’s Health, Queensland Hospital and Health Service
‘Marvellous to catch up with everyone – and to be able to discuss the sessions afterwards.’
‘We have come back from the conference feeling validated, more confident and connected. We wish that we had been attending previously.’
‘Being newer to this community personally I feel the importance of the community and can see the benefit for everyone. Professionally to have the privilege to listen to patients’ experience is very humbling and I am grateful for this opportunity. It inspires me to do more professionally to make a difference.’
‘Where to start?! It was such a fantastic experience. I am so grateful that we were offered the opportunity to share our experiences and to help perhaps encourage health professionals to re-evaluate needs and treatment for this group. I have come away feeling that I am part of an incredibly strong and educated community and am now in a much better position to be able to advocate for my boys. I feel so much more hopeful and better informed, especially regarding treatment options for bleeds, management of pain and arthritis. I would like to remain more connected and contribute more to our community in any way I can.’
‘It has given me some concrete ways to develop my work further and ideas on what is a priority.’
‘Hearing from patients helps me understand the importance of their voice and involvement to make my work truly successful. Provided good opportunities for professional networking.’
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