Recents
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…
Listen and learn like a legend
Vincent van Gogh cut one off in a rage, but Dr Kate Khair’s grandfather’s knew that Voltaire was on to…
Celebrating haemophilia specialist nurses
Last year, The Journal of Haemophilia Practice created a space within its pages to reflect on the important role that…
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),…
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…
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…
Exploring the experience of pain in haemophilia
Pain in haemophilia has become something of a hot topic – these days, any respectable haemophilia conference will include a…
Developing an educational resource on DDAVP for persons with bleeding disorders
Desmopressin, or DDAVP, plays a crucial role in the treatment of persons with inherited bleeding disorders, including von Willebrand disease,…
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…
Gene therapy for haemophilia B in the UK? Hold your horses!
After years on the track, gene therapy for haemophilia seems to have the home straights firmly in sight. Products for…
Animating self-advocacy for the bleeding disorders community
If you live with a bleeding disorder, self-advocacy isn’t just important – it’s vital. As a group of people who…
Improving joint health assessment when resources are limited
A recent paper in The Journal of Haemophilia Practice by Bhabani Sankar Dhal and colleagues describes the importance of regular…