Items tagged 'Personal stories'

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

The Missing Factor | Winter 2026 SPECIAL EDITION

20 July 2026

This special edition contains important information about the critical govt funding cut, honours the memory of Ann Roberts, celebrates our Men's Retreat, and more

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

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