Living a new normal: a mum’s experience of Type 3 von Willebrand disease
Anna (a pseudonym) lives with her husband and two children. Her daughter Isla (a pseudonym) was six months old when she was unexpectedly diagnosed with Type 3 von Willebrand disease. “She went down for her usual nap and when we went to check in on her, as we normally would, we noticed that there were …
Women and Glanzmann thrombasthenia: GT360
The platelet function disorder Glanzmann thrombasthenia is known to affect roughly equal numbers of men and women. However, findings from our Glanzmann’s 360 (GT360) study suggest that women are impacted to a greater degree. In a previous blog, we gave an overview of what GT360 told us about living with Glanzmann’s. Of 117 participants, 66 …
Life with Glanzmann thrombasthenia – Results from our GT360 study
When it comes to rare bleeding disorders, the clue is in the title – they’re rare by definition. One of the rarest, Glanzmann thrombasthenia, affects around only 2 in a million people globally. So, you can imagine that researching how people live with it isn’t straightforward. Being relatively few in number, people with Glanzmann’s …
Connections, community and von Willebrand disease
Recently, members of the Haemnet team took part in a collaborative event for the von Willebrand disease community, along with Barts Health NHS Trust/Royal London Hospital and The Haemophilia Society. The aim of the ‘VWD: Understanding and Thriving’ event was to share information about new treatments for von Willebrand’s – and also to provide an …
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, …