December 2022 Newsletter

Gavin's outback camping story

Camping can be a memorable experience. If you love the outdoors, it's a way of getting off the beaten track and taking your time to enjoy the natural landscape around you.

Gavin shares his story of outback camping from Perth to Darwin and how he managed the challenges of a severe bleeding disorder – planning with his Haemophilia Treatment Centre, packing his treatment product and regular stops with stretches on the long road trip. And had a fantastic time!

Planning a holiday? Check out these travel tips

Heading away on a trip, whether it's interstate or overseas, can be a great adventure, but planning is essential. The HFA website has lots of information on travelling with a bleeding disorder:

• Travel Tips Webinar
• Interstate Travel Tips
• Overseas Travel Tips
• What do I need to do if I am travelling?

Your travel to do list:
1. Contact your HTC early
2. Research HTCs along your route
3. Organise (extra) Treatment and supplies
4. Travelling with & storage of treatment
5. Are you travelling by plane/boat? Do you need travel letters?
6. Do you need travel insurance? 

The Conference is coming to Melbourne in 2023!     

Save the date – the 21st Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders is coming to Melbourne on 24-26 August 2023.       

The conference will see expert health professionals and community members come together to share their knowledge and experiences with bleeding disorders. With topics ranging across a variety of areas and current issues, the 2023 conference will cater to everyone in our community. We hope to see you there!

Google Calendar | Outlook | Office 365 | Yahoo! Calendar

Research opportunities     

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

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.

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.