Recents
Breaking up is hard to do – a new start for Haemnet
It is just over 10 years since Kate Khair and I first formed Haemnet and began supporting the Haemophilia Nurses…
The need to change perception
Why we need a European conference on women and girls with bleeding disorders Let me invite you to…
POCUS focus
Bleeding into the joints is a common ‘complication’ of having haemophilia. As any of us who have experienced this can…
Tuning in on gene therapy
I began working as a bleeding disorders research nurse in 2012. Since then, I have been involved in many…
Only a carrier?
The gene variant that causes haemophilia can be found in both men and women. Traditionally, women who have this genetic…
Choices and voices
The opinions and experiences of people with haemophilia increasingly shape the availability and choice of different treatment options. Scientists and…
Family focus
Bleeding disorders are usually inherited, so understanding how a bleeding disorder fits into family history is important. But even when…
The patient gene therapy journey
Gene therapies for both haemophilia A and B are currently in development. Although this is ongoing, the first gene therapy…
Freedom and control: Emi & Me
Prophylactic factor replacement remains the gold standard treatment for people with haemophilia (PwH). Since its introduction, prophylaxis has led to…
Living longer – The challenge of ageing with haemophilia
Thanks to advances in treatment and the mainstreaming of regular prophylaxis, people with haemophilia are living longer than ever before…
Let’s talk
Just imagine… You’re a first-time mother. Your pregnancy is uneventful and the birth is fine. When your son has a…
“It’s a way of life” – Perceptions of Pain in Haemophilia study results
Pain is, sadly, something most people with haemophilia have a close familiarity with. Pain is a highly personal experience. It’s…