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Welcome to the latest newsletter
The Australian Bleeding Disorders Conference is only a few short months away! Scroll down to check out the program overview, and if you haven’t registered yet head to our website today – the early bird rate ends 30 June.
Gene and emerging therapies are always a hot topic in our community. AHCDO’s Ashley Fletcher shares the latest news from BLOOD 2024 and a reminder to check out our GETs Hub. If you want to have your say on haemophilia and gene therapy, scroll to the end for a link to the Uni of Sydney gene therapy survey.
Women and girls with bleeding disorders face many challenges. In this newsletter we share Laura Bardell’s article on understanding your menstrual cycle with a bleeding disorder, and Glen and Jan’s story about raising – and advocating for – their two daughters with haemophilia.
As always, thanks for being part of our community.
Program overview now available!
The Australian Bleeding Disorders Conference is coming up and we’re happy to share that the program overview is now available. This year’s program has us really excited – from sessions on gene and emerging therapies, to women and girls with bleeding disorders, to fantastic youth and getting older programs.
We also have a great line-up of speakers, including our international keynote speaker, Dr Cedric Hermans. But you’ll have to wait a little longer to learn more about them.
If you haven’t yet registered for the Conference, now is the time to do it with the early bird rate ending 30 June. Register here.
Gene and emerging therapies in haemophilia
Exciting advancements in gene therapy and other innovative treatments for haemophilia were presented at the Blood 2024 conference in Brisbane, offering new hope for long-term treatment solutions.
Ashley Fletcher, AHCDO Australian Bleeding Disorders Registry (ABDR) Research Fellow, shares his report in National Haemophilia.
“These [new] therapies mark a significant step toward reducing the burden of lifelong treatment and improving quality of life for people with haemophilia.”
Interested in learning more about gene and emerging therapies? Check out the GETs Hub on the HFA website.
Understanding your menstrual cycle with a bleeding disorder
Many young people feel some level of worry about starting their menstrual cycle. For those who live with a bleeding disorder, this worry can be heightened due to the uncertainty of how the bleeding disorder may affect their experience.
Registered counsellor and former midwife, Laura Bardell explains how understanding the menstrual cycle, knowing what to expect, how to look after yourself and tracking the cycle is key to reducing worries and identifying any concerns that may need to be addressed.
“For those who live with a bleeding disorder, this worry [about starting their menstrual cycle] can be heightened due to the uncertainty of how the bleeding disorder may affect their experience.”
When your daughters bleed too
Glen and Jan, parents of two daughters who carry the gene alteration causing haemophilia and have bleeding symptoms, talked to Suzanne O’Callaghan at HFA some years ago about their experience. Today we still hear stories from women about similar experiences growing up. Through HFA’s advocacy around women and girls we hope this story will change in the future.
From the initial shock to the fight to advocate for their daughters, Glen and Jan talk about raising two girls in a time when it was a widespread belief that ‘girls don’t get haemophilia’.
“Glen had always known there was haemophilia in his family. He himself has it, and he was aware of at least two uncles who also had haemophilia. But it wasn’t until his two daughters showed signs of bleeding poblems that he started to join the dots on bleeding and haemophilia among women in his family.”
Research opportunities
Check the HFA website for more information on research studies about bleeding disorders.
Haemophilia and gene therapy survey
Do you have haemophilia A (factor VIII/8 deficiency) or haemophilia B (factor IX deficiency)? Or are you a parent, partner or carer? Would you be prepared to share your views about gene therapy?
HFA and HFNSW are collaborating with the University of Sydney on an important study to find out what people with particular blood disorders and their families think about gene therapy. The findings will help government decision-makers assess whether to fund new gene therapies in Australia.
The University of Sydney is seeking Australian adults with haemophilia A or B or parents/partners/carers to complete an online survey. They want to know your attitudes to different aspects of gene therapies that have a high up-front cost to government. Read the Participant Information Sheet for more information. If you complete the survey, you will be offered a $25 gift voucher for your time.
