Recents
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…
Personalising haemophilia management with shared decision making
Haemophilia healthcare is constantly evolving. Partnership with people with haemophilia is increasingly recognised as vital for ensuring high quality…
V is not for von Willebrand disease!
I’m always very happy to go to Africa – and not so long ago I was lucky enough to go…
“I didn’t know I was a carrier”
Haemnet’s Cinderella Study explores the real life experience of women with bleeding disorders in the UK. Our third animation, Struggles…