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September has arrived and Bleeding Disorders Awareness Month is right around the corner. Have you ordered your promo items?
Are you using MyABDR? A very important update is taking place this Sunday 15 September. Be sure to scroll down so you know what to expect and how it might impact you.
Last week we recognised Women’s Health Week, with information and tips on tackling taboos and handling difficult conversations. We also remind everyone that women bleed too in a powerful video featuring Sharron, Cheryl, Shauna, Susie and Robyn.
Featuring another report from the WFH Congress, this month we highlight Physiotherapist, Bianca Da Silva’s experience attending the muskuloskeletal track.
What’s been popular on socials? The Paralympics of course! We were thrilled to see Ed Fuller and his team win gold. Ed Fuller has overcome significant joint damage caused by haemophilia to compete. Check out the post on Facebook.
As always, thanks for being part of our community, and happy reading!
Order your promo items for BDAM!
Bleeding Disorders Awareness Month is coming up fast! Are you planning an event this October to help raise awareness? Order your promo items now to ensure you don’t miss out.
We have toy cars, balloons, pens, kids activity sheets, stickers, posters, temporary tattoos and more available to support your event and help you raise awareness.
MyABDR and multifactor authentication
On this Sunday 15 September 2024 MyABDR will change so that you need to use multifactor authentication to login.
What’s multifactor authentication? It is now a government security requirement for MyABDR – find out more here.
If you use MyABDR, what does this mean for you?
When you next login after 4pm on Sunday 15 September
- You won’t be able to use your PIN to login anymore
- You will be invited to set up multifactor authentication
- Do you prefer to have a number pushed to your device to login (like MyGovID)? You will need to install the OKTA Verify app on your device BEFORE you login
- If you have any problems setting up, contact MyABDR Support – T: 13 000 BLOOD (13 000 25663) E: myabdr@blood.gov.au
How to find out more?
- Check your MyABDR user emails from the National Blood Authority Support team!
- There is some background information on the NBA website – here
- Keep an eye on your emails this week for more info – including ‘how-to’ videos and guides.
Women’s Health Week
2-6 September 2024 was Women’s Health Week. We dove into topics from knowing your body and tackling taboos, to advocating for yourself.
A key theme throughout the week was courageous conversations. Sharing stories and tips from community members, we provide some ideas on how women can talk about their bleeding disorder with their doctors, and ways to encourage others to open up about their experience.
Ultrasound, bleeds, joints, and sport
Physiotherapist, Bianca Da Silva shares her WFH Congress report, ‘Ultrasound, bleeds, joints and sport’ in the latest issue of National Haemophilia.
She talks about the different sessions she attended as part of the musculoskeletal track, including workshops on joint ultrasound imaging and optimising musculoskeletal management for people with bleeding disorders, and the session Game-changing health: bridging new treatment, sports and everyday living.
Women bleed too
Women bleed too! Sharron, Cheryl, Shauna, Susie and Robyn talk about their experiences with bleeding disorders. They share what they have learned about advocating for themselves, particularly when they are dealing with doctors and nurses outside of their HTC.
Research Opportunities
Check the HFA website for more information on market ressearch studies about bleeding disorders.
VWD 360 Study
Do you have VWD? Would you like to contribute to an international research study about what it is like to live with VWD? Haemnet’s VWD 360 study aims to gain a greater understanding of VWD and how it affects the everyday lives of you and your family. It involves an online survey and an optional in-depth interview and bleeds diary. You will be reimbursed for your time.
Linguistic Validation Project
With all the new treatments, there is a lot of work to develop surveys for people with haemophilia. Can you help with a project to check that the wording is right for Australians?
As a last call, the Connect With Language research team would like to interview 2 male adolescents aged 12-17 (with parental consent and their parents invited to be present). This Linguistic Validation project will seek their feedback on the wording of a questionnaire. They need to be Australian to participate. They will be reimbursed $90 for their time.
Connect With Language project flyer >
