Recents
Sticker charts, school trips and severe haemophilia A — Debbie’s story (part 2)
Learning to treat her son Jamie* (*a pseudonym) prophylactically after his diagnosis with severe haemophilia A was a major step…
A diagnosis of severe haemophilia means my son gets treatment — Debbie’s story (Part 1)
In the first of a two-part blog, Debbie shares her experience of her son, Jamie, having an unexpected diagnosis of…
Virtual haemophilia care — What do the experts say?
Community advocate Rich Gorman comments on a recent paper discussing virtual care for haemophilia, published in The Journal of Haemophilia…
Raising girls with Type 2A von Willebrand disease (part 2)
In the second part of their blog about family life, Alex and Jo talk about how they approach raising girls…
Raising girls with Type 2A von Willebrand disease (part 1)
In the first part of a two-part blog about their family, Alex and Jo discuss how they feel about having…
A long life with haemophilia: Terence’s tale and the power of storytelling
When Terence O’Rourke sat down with Dr Meila Roy of the Southern Haemophilia Network to talk about living a long…
Caring for boys with severe haemophilia A: a family journey (part 2)
Parents Lauren and Ben discuss the role that teamwork and trust have played in their family journey with haemophilia A
Rarer than rare: Glanzmann thrombasthenia in Nigeria
On Rare Disease Day 2025, we share the story of an inspirational young woman from Nigeria with Glanzmann thrombasthenia
Caring for boys with severe haemophilia A: a family journey
Parents Lauren and Ben discuss early struggles with haemophilia treatment, and overcoming fear, stress and anxiety
Living a new normal: a mum’s experience of Type 3 von Willebrand disease
Anna discusses her experience of adapting to a different way of life following an unexpected diagnosis
Connections, community and von Willebrand disease
Recently, members of the Haemnet team took part in a collaborative event for the von Willebrand's community
Reflections on the Infected Blood Inquiry report: the beginning of justice
Three weeks on from the publication of Sir Brian Langstaff’s report on the Infected Blood Inquiry, Sally-Anne Wherry reflects on…