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Recents

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

Community Voice
28th February 2025
By Kathryn Jenner

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

Community Voice
25th February 2025
By Kathryn Jenner

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

Community Voice
9th December 2024
By Kathryn Jenner
VWDAlogo

Connections, community and von Willebrand disease

Recently, members of the Haemnet team took part in a collaborative event for the von Willebrand's community

Community Voice
4th November 2024
By Kathryn Jenner
Book representing the Infected Blood Inquiry report

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…

Community Voice
11th June 2024

Accessing haemophilia care in Uganda

The theme for World Hemophilia Day 2024 is ‘Equitable Access for All: Recognizing All Bleeding Disorders’. If you have haemophilia…

Community Voice
17th April 2024
By Rich Gorman

In addressing equity, we need to acknowledge the rares within the rare

For Rare Disease Day 2024 the theme is “equity.” This is certainly a topic that resonates within the bleeding disorders…

Community Voice
29th February 2024
By Luke Pembroke

Celebrating haemophilia specialist nurses

Last year, The Journal of Haemophilia Practice created a space within its pages to reflect on the important role that…

Community Voice
26th January 2024
By Rich Gorman

Pathway to Cures: Seeking a world without inheritable blood and bleeding disorders

Imagine a world where inheritable bleeding disorders don’t exist. It’s an ambitious vision but one that Pathway to Cures (P2C),…

Community Voice
12th January 2024
By Haemnet

Shared decision-making and haemophilia gene therapy

  Shared decision-making is a catchy piece of language – and it increasingly feels like it’s everywhere when it comes…

Community Voice
13th December 2023
By Rich Gorman

Discussing the possibility of being a haemophilia carrier

In a fascinating paper, recently published in The Journal of Haemophilia Practice, Keiko Nozaki and Akemi Yamazaki explore how families…

Community Voice
24th November 2023
By Rich Gorman

Contaminated blood: exploring the intergenerational impact

There is much to say about the contaminated blood scandal of the 1970s and ‘80s. It devastated the bleeding disorders…

Community Voice
13th October 2023
By Rich Gorman