Recents
Bruises, bleeds and babies – the Cinderella stories
Most people know the story of Cinderella. Having spent years being overlooked, unrecognised, ignored, she eventually achieves recognition. Her name…
Women shouldn’t need to ask for equitable care
By Hannah Yarnall, Youth Ambassador for The Haemophilia Society UK How can you help improve the lives of women living…
Effective advocacy can help develop physiotherapy services
By Alex Taylor-Rose, Youth Ambassador for The Haemophilia Society UK Those of us who live with haemophilia are used to…
Bleeding disorder services need to think about parents too
By Josh Taylor-Rose, Youth Ambassador for The Haemophilia Society UK What changes would have a positive impact on life for…
What’s in a name? Pain is real if you live with it
Chronic pain is defined as pain that lasts for more than three months – something that many people with a…
How safe is our prescribing practice?
The Prescribing Competency Framework sets out standards for non-medical prescribing that apply to patient assessment, treatment selection and the procedures…
A very human condition: ethnography and the lived experience of haemophilia
Quantitative versus qualitative. Cold, hard facts, and structured statistical data, versus impressions, opinions, motivations, feelings, beliefs and attitudes. While measuring…
Prophylaxis is not the end of the story for haemophilia
Widespread availability of factor prophylaxis – at least in developed nations – has changed the lives of people with haemophilia.…
Race Around The World #RATW campaign
What started as a local attempt to re-invigorate the Yorkshire bleeding disorders community has ended up as an epic worldwide…
Introducing new therapies – the forgotten heroes
We often hear of the endpoints, outcomes and p values associated with introducing new therapies for haemophilia. Delegates to this…
Phoenix rising – share your stories with us
Last year saw the culmination of two major consultation exercises affecting the bleeding disorder community. In May 2020 there was…
Catch-up time for diagnosis and management of von Willebrand disease
While haemophilia is the most well-known inherited bleeding disorder, the commonest such disorder is in fact von Willebrand disease (vWD).…