A good year for The Journal of Haemophilia Practice
There is always a sense of anticipation among Haemnet’s publications team when we receive the annual report for The Journal of Haemophilia Practice. As every year, the first thing to happen when the 2022 report arrived was a quick scroll through to find the statistics on readership and article downloads. With over 25,800 unique clicks on …
Reflecting on the role of the haemophilia nurse
For International Nurses Day 2023, I’m delighted that The Journal of Haemophilia Practice is publishing the first papers in our Living, Caring, Learning series, shining a light on the important and often unseen role of nurses in haemophilia and bleeding disorder care. Written by nurses from around the world who have spent many years of their …
Mild disorders matter
People whose bleeding disorders are categorised as ‘mild’ (often defined as having between 5% to 40% of usual clotting levels) are often unaware that they have a condition until they experience serious trauma or undergo an operation. Although the impact of ‘mild’ bleeding disorders may be infrequent, it’s just as important for people with mild …
A bleed is a bleed – whatever your diagnosis
The theme of World Hemophilia Day this year is “Access for All: Prevention of bleeds as the global standard of care”. There is absolutely nothing about this that you couldn’t agree with. We know that 80% of people with haemophilia in the world either have no diagnosis or no access to care, and that prophylaxis (for …
Capturing quality of life after gene therapy
The treatment options available to people with haemophilia have expanded rapidly in recent years. With gene therapies for both haemophilia A and B now being licensed, the treatment landscape is expected to shift again. Understanding how different treatments can impact different aspects of quality of life for people with haemophilia is important. Health care …
Visualising haemophilia gene therapy
With the recent licensing of haemophilia gene therapy, it’s no surprise that it was a hot topic at the EAHAD congress in Manchester last month. I heard some interesting comments about the dosing day, and how rather simple the day can seem. With the right staff and setting requirements, it’s true that gene therapy is …
Let’s hear it for the girls
On International Women’s Day 2023, Haemnet shines a light on women and girls with bleeding disorders Looking back on Cinderella Back in the summer of 2020, Haemnet launched the Cinderella Study. We conducted a survey (to which we had almost 300 responses) and ran a series of focus groups and interviews with women with …
Yes, haemophilia affects women too
For far too long, haemophilia has been associated with men. Women have been relegated to being labelled as ‘carriers’ and imagined as being largely unaffected by the condition themselves. As Simon Fletcher describes in his important and fascinating article “‘I didn’t know women could have haemophilia”: a qualitative case study’, this is far from the …
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 …