No 213 March 2021
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From the President
Gavin Finkelstein is President, Haemophilia Foundation Australia
As the vaccine for COVID-19 becomes available around the country, the lives of our vulnerable members and health workers at the front line will change considerably and we look forward to the vaccine being rolled out to everyone. We have provided some information on our website following questions from our members, but if you have specific questions about the vaccine and your bleeding disorder discuss this with health professionals at your Haemophilia Treatment Centre (HTC).
ADAPTING TO CHANGE
It has been an extraordinary year, and we have learned much about patience, resilience and of the importance of supporting one another. HFA has been able to adapt and continue its operations by turning possibilities into reality.
We had several parts of our digital communications project awaiting people or financial resources and we are delighted we have been able to bring more of that work to fruition than we might otherwise have done without the pandemic, because it became a priority! Digital communications have become more and more important for people to feel connected and to get their information generally, but we had to re-engineer some of the work our staff would do over the last year because they have mostly been working from their homes.
HFA has suffered on the income side of the equation and we have pulled back hard on some of our planned expenses to make ends meet. However, with the support of some very loyal donors, grants, government business support and absolute diligence we have been able to maintain productivity and manage our situation through COVID-19 without loss of staff or important services to our community. Our staff have adapted to not being able to meet face to face and travel but we recognise this has had an effect on our business – we have survived with Zoom meetings, teleconferences and email communications, but it’s just not the same as a face-to-face discussion. We all know that, but it’s OK for now!
We have been fortunate to have been able to concentrate on our digital communications project work and you will notice website enhancements that will make it easier for you to find information and news, and more personal stories and the experiences shared by people in our community about their journey of living with a bleeding disorder. The extent of the work done on both the main HFA website www.haemophilia.org.au and the youth website www.factoredin.org.au is not completely visible to users, but it involves a lot of work at the backend to upgrade and improve the websites and make them more user-friendly. The HFA website provides the framework for the websites and social media platforms for state/territory foundations as well, so continuous improvement is important for all of us.
Some people in our community have had the opportunity to consider new treatment for haemophilia. The National Blood Authority finalised its tender for extended half life (EHL) factor VIII and IX and Hemlibra became available for prophylaxis for people with haemophilia A with and without inhibitors late last year. It is important to discuss options carefully with HTC staff so you understand how these treatments work, and what the best treatment is for you.
We have our very first virtual national conference coming up in October 2021 - the 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders - and we look forward to welcoming you to attend. We decided not to hold a face-to-face meeting due to the uncertainty of the pandemic, but we are very excited to be having this virtual meeting and can assure you that nothing will be lost from the conference. We have engaged a professional virtual conferencing service and all sessions will be moderated. Some will be recorded to manage time differences and for speaker convenience. The program will be rich and full, as we will have the very best Australian and international experts bringing you the most up to date information about treatment and care and living well with a bleeding disorder.
This might be your first opportunity to participate because of distance, travel, time, cost, or simply because sitting in a conference or meeting is not your cup of tea. You will be able to register for the conference and participate in sessions at your computer in the comfort of your own home. It is a great chance for you and your family to learn more and meet up virtually with other people living with a bleeding disorder, as well as with the broader bleeding disorders community who provide our care and treatment. There will be a registration cost for each delegate who registers, but if you need financial assistance to participate, we will make sure you don’t miss out on this great opportunity.
We will be in touch with further details of the conference and financial assistance programs.
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Date last reviewed: 23 March 2021