Items tagged 'Personal stories'

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

TJ’s path to independence with VWD

27 April 2026

Sam, mother to 7-year-old TJ, shares her story about raising a young son with type 2A VWD

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

VWD: Your voice matters – Sophie’s story

7 April 2026

Family Planning and Pregnancy, Personal stories, Von Willebrand disease, Women & girls

Sophie talks about being diagnosed with VWD in her 20s, pregnancy, and advocating for yourself and others

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

Carly’s story: Life with Glanzmann thrombasthenia

26 February 2026

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.

Bel’s story: Navigating factor X deficiency

23 February 2026

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

November 2025 Contact

19 November 2025

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