January 2023 Newsletter

Happy New Year!

Welcome to the first HFA newsletter for 2023! We hope you had a wonderful break over the holiday period. This year is already shaping up to be a busy one. Are these dates in your calendar?

• 17 April 2023: World Haemophilia Day
• 24-26 August 2023: 21st Australian Conference on Haemophilia, VWD & Rare Bleeding Disorders
• October 2023: Bleeding Disorders Awareness Month

Read on for the latest news, stories from our community, and an opportunity to help shape upcoming fact sheets on new treatments.

What are your questions about new haemophilia treatments?

We're developing some short fact sheets about new haemophilia treatments and we need your help!

If you have 5 minutes to complete a quick online survey, we would really appreciate your ideas on what questions to answer and what outcomes from treatments you would like to see. Your responses will be completely anonymous.

Submissions close at midnight on Sunday 22 January 2023 (AEDT).

Starting school with a bleeding disorder     

Starting childcare, kindergarten or school – or high school – can be both an exciting and daunting transition for children and their families. Haemophilia nurses Janine Furmedge and Jaime Chase share their advice in the latest issue of National Haemophilia.

Haemophilia – the spice of life     

"My name's Willem. I am 20 years old and I have severe haemophilia A."

Willem spoke to HFA about working, exercising and being out and about in these days with new treatments.

"I hang out with my friends at the pub or see what else there is to do, maybe see a movie. At one stage I had an interest in axe throwing. I used to catch up with people after work to do it now and then. It was great fun – just a bigger version of darts and makes you feel more Viking and Nordic!"

Research opportunities     

Check the HFA website for more information about three market research studies about haemophilia.
 

Do you have haemophilia B? Or are you a carer? Are you interested in upcoming treatments?

Support and education materials for them need to be developed and your opinions would be very helpful.

White Rabbit is conducting online interviews. You will be reimbursed for your time.

Do you have moderate or severe haemophilia B? Interested in making your opinion known about new treatments?

IQVIA is conducting online market research interviews about experiences of living with haemophilia B and opinions on treatment.

You will be reimbursed for your time.

Do you have haemophilia A or B? Or are you a parent/carer? What is your perspective on the impact and on the support needed?

So What Research is conducting online or phone interviews about living with haemophilia, treatment and thoughts about the future.

You will be reimbursed for your time.