Recents
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…
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…
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…
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…
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…
Escape to the Magic Garden
My earliest memories of bleeds are not necessarily of the bleeds themselves but of the imaginary, mystical garden full of…
Bowled Over by Basingstoke
There is more to haemophilia treatment centres than meets the eye. While I value the importance of a great multidisciplinary…
Caring for boys with severe haemophilia A: a family journey – part 1
In the first of two blogs about having boys with severe haemophilia A, parents Lauren and Ben discuss early struggles…
Caring for boys with severe haemophilia A: a family journey – part 2
In our second blog about Lauren, Ben and their family, they focus on the role that teamwork and trust have…