Recents
On von Willebrand disease, community, and being the voice of the voiceless
Sunny Maini talks about using his experience of von Willebrand disease and a successful corporate background to nurture an empowered…
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…
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…
From haemophilia hero to ecology zero: Luke’s new chapter
Back in the 2011, I received an invitation to participate in a focus group for young people with haemophilia. The…
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,…