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Items tagged 'Personal stories'

  • News & Stories

VWD: Your voice matters – Sophie’s story

Sophie talks about being diagnosed with VWD in her 20s, pregnancy, and advocating for yourself and others
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  • News & Stories
  • Video

Steve on gene therapy for haemophilia

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

Blessed in a different way

  • Simoni and Javonte -
  • 18 March 2026
Simoni and Javonte caught up to talk about growing up with a bleeding disorder, treatment, playing sport and why it's important to share your story.
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  • News & Stories

Simoni and Javonte – growing up with a rare bleeding disorder

Simoni and Javonte chat about growing up with VWD type 3 and severe haemophilia
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  • News & Stories

Carly’s story: Life with Glanzmann thrombasthenia

Carly is 22 and talks about living with Glanzmann thrombasthenia as a young person and the value of support, living your life, and putting your health first.
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  • News & Stories

Bel’s story: Navigating factor X deficiency

Bel talks about living with factor X deficiency, a rare bleeding disorder that affects the blood's ability to clot.
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  • News & Stories

Youth at the Conference

At the Conference young people with bleeding disorders came together from around Australia to learn, connect and share experiences.
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  • National Haemophilia Journal

VWD self-advocacy – your voice matters

  • Sophie -
  • 16 December 2025
Sophie tells her personal story of advocating for herself while pregnant and managing childbirth with Type 1 von Willebrand disease (VWD).
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  • News & Stories

Nicola and Will – playing competitive sport with haemophilia

Nicola and her son, Will, share their journey with haemophilia and playing elite level sport
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  • National Haemophilia Journal

Navigating factor X deficiency

  • Jen Dowbnia and Lara Olson -
  • 17 September 2025
How do haemophilia nurses support people with factor X (10) deficiency? And Bel shares her personal story.
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