Haemophilia guide launch

The 2026 version of Haemophilia: a guide for parents of a newly diagnosed child (the red folder) is now being shipped!

In August 2026 we celebrated the launch with one of our families and members of The Henry Ekert Haemophilia Treatment Centre at the Royal Children’s Hospital, Melbourne.

Our thanks to Isabelle, Jake, baby Mack, HTC Director, Dr Chris Barnes, Haemophilia Nurse Co-ordinator, Janine Furmedge and Haemophilia Data/Product Manager, Julia Ekert for taking time from their busy day to join us.

Often called the ‘Newly diagnosed folder’, the guide is a comprehensive resource for new parents.

‘The Newly Diagnosed folder is essentially an information booklet for parents, grandparents and family members that gives you all you need to know about haemophilia. It’s a great tool to understand what bleeds are, what bruises are, what you can expect in your first year, in the coming years of your child’s life, and how to tackle those moments.’
Isabelle & Jake

‘One of the things that we always chat with parents about is being a little bit careful about where you get your information from. The folder is valuable because it gives information in the Australian context, relevant to the health care system in Australia. And it gives stories from parents around the country who are going through similar experiences.

‘The folder is also helpful for finding the information that they need at the time they’re ready for it. They can dip in and out of the book, and they can share it with their families. Often everyone in the family wants to support them, and it’s good when the family has the same source of information.’
Janine

‘I think the most important message that I can give parents, having been involved in those initial discussions over the last 30 years or so, is to get information.

‘For parents of children newly diagnosed with haemophilia, it’s a period of time when they are very anxious and downright scared about the diagnosis. Information is really very important, and this book provides that information to you in an evidence-based but very easily understood manner. It doesn’t take away from the fact that your child has haemophilia, but it takes away some of that concern and presents the information a very reassuring way.’
Chris

How to order a print copy
Order online at www.haemophilia.org.au/resource-order-form
Contact HFA at hfaust@haemophilia.org.au or 03 9885 7800

If you already have a red folder (2017 version), you have the option to order the new pages and tabs only and insert them into your existing folder cover.

Downloadable PDFs are available from the HFA website.

This education resource was published with the support of donations of many individuals to Haemophilia Foundation Australia and an education grant from Takeda.