Living with haemophilia

Living life on his own terms: Neill’s haemophilia journey

28 July 2026

Neill shares his experience growing up with haemophilia in the 1950s and 60s, changing treatments, building a career, travelling, and living a full life

Red Cake Day – Jasmin and Lincoln's story

Jasmin -
30 June 2026

Events & awareness, Growing up with a bleeding disorder, Haemophilia, Parents & families, Personal stories
Bleeding Disorders Awareness Month, haemophilia, Red Cake Day

Jasmin shares her story of raising awareness about haemophilia with her son Lincoln, who has haemophilia B.

Dom on having Gene Therapy for Haemophilia A

23 June 2026

Dom shares his experience of receiving gene therapy treatment for haemophilia A

Fernando on guitar for World Music Day

21 June 2026

11yo Fernando plays Paradise by Coldplay for World Music Day

Neil on getting older with a bleeding disorder

4 June 2026

Getting older, Haemophilia, Personal stories

Neil shares his experience of living with severe-presenting haemophilia A, and how he continues to live well as he gets older

Life with an extra challenge – Cassie and Noah’s story

27 April 2026

Boys, Haemophilia, Parents & families, Personal stories

Cassie talks about raising a young family with an extra challenge - her son Noah has haemophilia B

Michelle – Her journey to diagnosis

16 April 2026

Michelle first experienced bleeding symptoms, in the form of really flooding periods, at the age of 19. Nineteen years later - she got a diagnosis

Steve on gene therapy for haemophilia

26 March 2026

Steve shares his experience having gene therapy for severe haemophilia A – and how it has changed his life

Simoni and Javonte – growing up with a rare bleeding disorder

26 February 2026

Simoni and Javonte chat about growing up with VWD type 3 and severe haemophilia

Telling daughters: Zev’s story

26 August 2025

Growing up with a bleeding disorder, Haemophilia, Parents & families, Personal stories

'Make it a family conversation'. Zev shares his advice for talking to daughters about haemophilia

Paul talks about his career

12 June 2024

Paul shares his experience working as an apprentice shipwright and boat builder, a FIFO WHS manager, and today supporting his brother in a business with over 60 employees and a growing client base.

Jason – Growing older with haemophilia

19 July 2023

Jason shares his story of growing up with haemophilia and the very different story he was told as a teenager

Overcoming challenges – Adam’s story

19 July 2023

Adam was diagnosed with severe haemophilia A when he was only one week old, after developing an intracranial bleed at…

Haemophilia – when your daughters bleed too

19 July 2023

Glen and Jan, parents of two daughters who carry the gene alteration causing haemophilia and have bleeding symptoms, talked to…

Sharron – A woman with haemophilia, carrier, mother of a son with haemophilia, dad has haemophilia

19 July 2023

Sharron’s father Glenn has haemophilia, so she has always known and lived with haemophilia. When she was a child it…

Jane’s story – genetic testing for haemophilia

19 July 2023

One of the main reasons women choose to have genetic testing for the altered gene for haemophilia is to find…

Poppa and Roman share a special bond

19 July 2023

Haemophilia treatment has changed over the years. The story of ‘Poppa’ Erl, grandfather, and grandson Roman, shows just how much….

Living like a Swede

19 July 2023

Amanda (Mindi) Palm is an Australian community member and blogger who moved to Sweden for a few years. She explains…

Ben – a father’s perspective

19 July 2023

Ben and Kylie have a son, Ryder aged 4 with severe haemophilia A. Being the father of a small boy with…

Accessing treatment – Leah’s story

19 July 2023

What does access to the latest evolution of haemophilia treatments mean for a family? Leah shares her experience about new…

Growing up with haemophilia

18 October 2021

Dale grew up with haemophilia A, but he never let it stop him from doing anything.

Feeling so passionately about physical exercise

8 September 2020

Tim Demos has severe haemophilia A and has been working full time as a paramedic for the past 5 years.

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