What do we really know about von Willebrand disease?
Mention bleeding disorders and chances are most people will say, “Oh, you mean haemophilia?” Yet, von Willebrand disease (VWD) is by far the most common bleeding disorder. It’s also one of the least well understood. That may be because most people with von Willebrand’s have a relatively mild subtype (Type 1) and are only affected …
Unmet needs – going down the rabbit hole
We talk about unmet needs a lot in healthcare, and not least in bleeding disorders. But who says people with bleeding disorders have unmet needs? More than that, how do we decide what unmet need is? And who do we decide it with and for? Do the voices of patients or carers define this? To …
Peer reviewers, we salute you! – Peer Review Week 2024
Did you know this week is Peer Review Week? Peer review is a form of self-regulation of quality standards within a profession that involves work being evaluated by ‘peers’ who understand the field. In the world of journal publishing, it’s used to decide whether or not a paper is suitable for publication. This week (23-27 …
Why we need to shout louder about von Willebrand disease
With our VWD360 study underway, we look at why sharing experience is important for von Willebrand disease research Inherited bleeding disorders like haemophilia and von Willebrand disease (VWD) are rare. For every million people born, around 100 will have haemophilia A and just 20 will have haemophilia B. But around 125 will have clinically …
Family trees and factor – haemophilia education in Nigeria
Haemnet’s Director of Research, Kate Khair, recently travelled to deliver haemophilia education in Nigeria to support improved rates of diagnosis. Those of you who know me will know not only about my long history with haemophilia education, but also my love of all things African. So, when I was asked by the Novo Nordisk …
Eduard and Erik need apostrophes – or Pedants “R” Us
On International Apostrophe Day, Haemnet’s CEO, Mike Holland, muses on the naming of bleeding disorders When it comes to writing, we at Haemnet spend a lot of time agonising over little things like apostrophes, hyphens and colons. After all, we don’t want to find ourselves in the next edition of Eats, Shoots & Leaves, …
Sporting inspiration – exercising with a bleeding disorder
Our Project GYM resources provide hints and tips on exercise for people with bleeding disorders and personal trainers From the UEFA football championship, tennis at Wimbledon, and countless races, meets and tournaments, to the Olympics and the Paralympics, summer 2024 continues to be a busy time for sports. It’s exciting, entertaining and inspiring. …
On von Willebrand disease, community, and being the voice of the voiceless
Sunny Maini talks about using his experience of von Willebrand disease and a successful corporate background to nurture an empowered patient community I was diagnosed with Type 3 von Willebrand disease (vWD) as a baby – I bled in the cot. As a child, I was treated at Great Ormond Street Hospital, with Kate …
Reflections on the Infected Blood Inquiry report: the beginning of justice
Three weeks on from the publication of Sir Brian Langstaff’s report on the Infected Blood Inquiry, Sally-Anne Wherry reflects on her experience of that day and the questions that remain for the infected and affected Last month saw the publication of the Infected Blood Inquiry report. As the daughter of one of those involved, …
Accessing haemophilia care in Uganda
The theme for World Hemophilia Day 2024 is ‘Equitable Access for All: Recognizing All Bleeding Disorders’. If you have haemophilia and live in a developed country, access to care tends to be good. In some parts of the world, though, there are various reasons why people with haemophilia find it difficult to access the care …