We are very pleased to announce that the 2026 edition of the HFA newly diagnosed folder Haemophilia – a guide for parents of a newly diagnosed child is now available.
The guide was launched in August at a gathering held at the HFA office in Melbourne, where we were joined by one of our families, Isabelle, Jake and their baby, Mack, and Dr Chris Barnes, Janine Furmedge and Julia Ekert from The Henry Ekert Haemophilia Treatment Centre at the Royal Children’s Hospital.
The Newly Diagnosed folder is a comprehensive guide for parents. It aims to help parents understand all the issues they will encounter when their child is diagnosed with haemophilia. It also covers growth and development, parenting a child with haemophilia, exercise and sport. Information on support and contact details of services are also included.
Isabelle and Jake, together with HTC Director, Dr Chris Barnes and haemophilia nurse, Janine Furmedge spoke to us about the value of the Newly Diagnosed folder, and how it might be used.
Video transcript:
Dr Chris: So my name is Chris Barnes. I’m the Director of the Henry Ekert Haemophilia Treatment Centre at the Children’s Hospital here in Melbourne.
Janine: My name is Janine. I’m the haemophilia nurse at the Children’s Hospital in Melbourne.
Isabelle & Jake: Hello, I am Isabelle, and this is Jake. And this is our baby, Mack. Mack was diagnosed with severe haemophilia A at the age of five days old.
Supporting families following a diagnosis
Isabelle & Jake: We had an amazing birth. Everything went well. We went home, we had a little bruise on Mack’s leg, which continued to obviously grow. And then, you know, short time after being home, we ended up back in the NICU where things transpired. They told us that we have severe haemophilia A. So essentially that’s where our haemophilia journey started.
Dr Chris: I’ve been involved in haemophilia for 30 years. And that new diagnosis, that first time that parents hear the word haemophilia, it’s a period of time when they are shocked and scared.
Isabelle & Jake: I think initially you’ve painted a certain picture in your life of your baby and what’s going to happen. So I think in our case, it was completely spontaneous. So we didn’t even know what haemophilia was. So understanding that and how that would affect Mack’s life. Is he going to live? Does he have longevity? How is his life going to be compared to any other regular kid? will he be able to play sport? What medication there is and how often we would have to do that?
Dr Chris: It’s a period of time when they [parents] are very anxious and downright scared about the diagnosis. This book takes away some of that concern. It provides reassurance in an evidence-based way.
Janine: So the newly diagnosed folder is a book developed by HFA with all the multidisciplinary teams from the Haemophilia Centres around the country. And it’s for families with children newly diagnosed with haemophilia.
Isabelle & Jake: 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.
Dr Chris: It allows parents to understand haemophilia in a very patient-friendly way, and it allows them to gain more control of the management of the patients with haemophilia. So it’s an incredibly important resource.
The value of Australian-based information
Janine: I think [the Newly Diagnosed folder is] valuable because it gives information in the Australian context. So one of the things that we always chat with parents about is being a little bit careful about where you get your information from. So it’s relevant to Australia and the healthcare system in Australia. And I think it gives stories from parents around the country who are going through similar experiences.
Isabelle & Jake: Obviously, when you are newly diagnosed, particularly for us, this isn’t in the family for us. So it’s completely new. In those initial phases you go to the internet and you can sort of get, you know, get a bit of lost in information. So to have a reference point that we can get back to that is relevant to Australia, our treatments and what our conditions are here is critically important.
Janine: I like to think they’ll take away from the folder that they’ll be well supported throughout their journey with haemophilia, with their child, and I think the booklet is helpful for them just to find the information that they need at the time they’re ready for it, so they can dip in and out of the book, and they can share it with their families because everyone in the family wants to support them.
Dr Chris: It takes a village, and it’s important that other members of the family – grandparents, aunties and uncles – also understand the clinical significance of haemophilia and how patients are managed and the very effective treatment that we’ve got in 2026. So it is very helpful to pass this resource onto the extended family. And indeed, the friends can find a lot of information about haemophilia, which is very reassuring as a result of this book.
Isabelle & Jake: When we’re trying to explain something that we weren’t as aware of ourselves, being able to give a book for a reference to explain what the condition is and how we manage that for parents looking after them, aunties, uncles, friends trying to understand – childcare – yeah. It’s such a easy reference point to be able to provide and give the information and know that you’re giving them the accurate information.
Finding support and your community
Dr Chris: The most important, I think message that I can give parents, having been involved in those initial discussions over the last 30 years or so, is to get information. Information is really very important, and this book has the ability to provide that information to you in a very easily understood and reassuring manner.
It doesn’t take away from the fact that the patient, your child has haemophilia, but it presents the information in a very reassuring way.
Isabelle & Jake: The information and the knowledge that the HFA community can provide is extremely helpful and makes you feel not alone in this journey. And yeah. Getting involved with the WhatsApp groups, with mothers and introducing yourself because everybody will wrap their arms around you and hold your hand to make sure that, yeah, you can get through this first year.
Mack’s living, in our circumstance, a completely normal life. So from, you know, from a severe haemophilia A position with what’s available in the treatment and resources out there they can be confident that their life will be, you know, much the same as everybody else.
Janine: Treatment is amazing, particularly in Australia, and you have access to Haemophilia [Treatment] Centres. There’s a lot of staff there to support you and your Haemophilia Foundations as well, where you can meet other families and be supported by them as well.
Isabelle & Jake: Mack lives a normal life. He’s swimming. He’s at childcare. He’s doing gymnastics. We’ve travelled many a time. So for Mack, our first year’s been amazing. We’ve had a good time. And it’s just part of our life now.
