Using mixed methods to uncover Glanzmann’s Thrombasthenia
Rare Disease Day is celebrated globally on 28 February each year, drawing focus to over 300 million people worldwide who live with rare conditions. But Rare Disease Day isn’t just about raising awareness – it’s about advocating for better access to diagnosis, treatment, care, and equity of opportunity. Around 387,000 people worldwide are known to …
Meeting again in person at EAHAD
The Haemnet team has always found the annual EAHAD congress to be one of the most fun and sociable meetings in the bleeding disorders calendar. We’ve missed being there in person over the last couple of years, so we were pleased to refresh old acquaintances and make new friends in Manchester last week. With four …
A reconstitutional question
Factor replacement therapies have been revolutionary for people with haemophilia. The ability to treat at home – or even on the go – has given members of our community a level of freedom that earlier generations sadly never had. These treatments do still require quite a bit of technical know-how, training, and time to prepare …
What’s in a label?
I have asthma – I am not an asthmatic! I am Kate, a woman, a children’s nurse, a daughter, a sister, an aunt, a researcher, and many other things too. Oh, and I have asthma – it does not define me. Yet, when it comes to caring for people with haemophilia, we call them haemophiliacs or …
Looking back on 2022, we’re looking forward to 2023
2022 was a transitional year for Haemnet, and it was both full and fulfilling. We’ve asked important questions, explored and analysed. We’ve created, published and podcasted. And we’ve shared our research findings, expertise and experience internationally, in print, online and in person. What does this mean in practice? Well, we’ve added it all up …