Haemnet
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Haemnet works at the heart of the bleeding disorders community.
We're a specialist consultancy, engaged in research, communications, community education and support. Haemnet is a specialist research and communications consultancy embedded in the bleeding disorders community. We undertake research relevant to patients and their families, we communicate on the things that matter in bleeding disorders, and we enable the community to share their experience to expand knowledge.
❤️ Our family-focused series with explores what it's really like to live with a bleeding disorder. From treatment choices and challenges, through being the partner of a person with a bleeding disorder, to the support that parents need, there's much to explore — and more to come soon.
🎧 Available across platforms and via link
🔗 https://loom.ly/A4UWu6M
10/10/2026
October 10 is .
This year's theme is "Lived experiences heard: Real voices, real change".
We know from our lived experience that people with bleeding disorders and the people who care for them need more support for their mental health and wellbeing. Haemophilia, VWD, Glanzmann's, rare factor deficiencies… We're yet to come across a rare bleeding or platelet disorder that doesn't impact mental health.
We think it's important for the voice of everyone living with a rare bleeding or platelet disorder to be heard, and for this to help inform and shape the policies, services and decisions that affect them in terms of their both mental health and wellbeing, and their broader treatment and care. It's the inspiration for why we do what we do.
We hope that by raising awareness of the mental health impact of living with a bleeding disorder, we can help support positive change.
💙 10 October is Hereditary Factor X Awareness Day
Hereditary Factor X Deficiency (HXFD) is an extremely rare bleeding disorder affecting between 1 in 500,000 and 1 in a million people globally.
People living with severe HXFD experience bleeding symptoms similar to haemophilia. These can be life-threatening.
Early diagnosis and treatment are essential for achieving the best outcomes for people living with HXFD. Its rarity alone can make diagnosis difficult, and although a plasma-derived Factor X concentrate is now available, it remains inaccessible in many parts of the world. In joining HXFD Awareness Day, we're joining the call to change this.
05/10/2026
We're proud to share the news that Dr Kate Khair has joined the board of bleeding disorders charity Save One Life.
From becoming a haemophilia nurse to leading Haemnet’s lived experience research, Kate has spent decades seeking to improve the lives of people with bleeding disorders in different ways.
As she continues on this journey, ‘Sister Kate’ shares some of what has brought her there on the Haemnet blog.
https://loom.ly/fYr3h78
29/09/2026
We're still interested to hear from people living with haemophilia B, or who care for children with haemophilia B
🌟 Have you ever considered taking part in research? has new research studies starting – and we’re particularly interested in hearing from people with haemophilia B and their carers, living in the UK.
💬 By sharing your experience in our lived experience research, you can contribute to improving treatment and care for everyone who lives with a bleeding disorder.
🔍 Get in touch to find out more about how you can participate.
21/09/2026
💜 Immune Thrombocytopenia (or ) is a rare autoimmune disease
💜 It causes low platelet counts, which means it's harder for the blood to clot. This can lead to easy bruising, bleeding, and fatigue — which can have big impacts on daily life.
💜 21-27 September is Global ITP Awareness Week. We're joining the ITP community worldwide in advocating for education, research, and support to help improve life for people living with ITP.
We're pleased to share the news that the results of our FVIID 360 study have been published in Haemophilia journal.
FVIID 360 explored the real-life impact of Factor VII deficiency on individuals and their families, focusing in particular on wellbeing and quality of life (QoL).
🔍 We learned about the day-to-day lives of 100 people living with Factor VII deficiency, both adults and children.
🚺 Our findings showed that women are more greatly impacted by bleeding than men, and that they experience longer delays in being diagnosed.
❗ We also learned that people with Factor VII deficiency on prophylaxis experienced more bleeds than those not on regular treatment — a paradox that highlights the need for treatment improvements.
🩷 A huge thank you to everyone who shared their experiences with us in the FVIID 360 study.
Did you know that physical activity can have positive benefits for people living with a bleeding disorder?
On UK National Fitness Day on 16 September, we’re thinking about exercise.
🏋️ Haemnet’s Project GYM resources provide guidance on exercising safely, along with expert tips on strengthening and building muscles, and advice for personal trainers.
🏃♂️ If you live with a bleeding disorder and are interested in exercising at the gym, this could be a useful place to think about starting your fitness journey.
🚴♂️ As this year’s UK National Fitness Day tagline says, it’s all “Powered by You”.
For more on Project GYM and our exercise resources, visit https://loom.ly/QtJpNKs
💡All new articles published in Bleeding Disorders: Care & Practice now include a plain language summary, making it easier for everyone to find out about the latest bleeding disorders research.
🆕 New and forthcoming articles in include:
🇪🇸 Benitez Hidalgo et al. on how a simple model for measuring how long with rFIX-FP remains active in the body measures up against testing with specialised software (WAPPS-Hemo)
🇬🇧 Narrative review by Owen-Wyard et al. on needs in extremely rare
🇺🇸 Case series by Escobar et al. on the use of a new bypassing agent in people with A and on prophylaxis who had major
🔗 Link to the journal in bio
07/09/2026
Do you have a bleeding disorder? And have you ever considered taking part in research?
🌟 Haemnet has a number of new research studies starting soon – and we’re particularly interested in hearing from people with haemophilia B living in the UK.
👤 By sharing your experience in our lived experience research, you can contribute to improving treatment and care for everyone who lives with a bleeding disorder.
🔍 To find out more about participating in our studies, get in touch: https://loom.ly/vkd8zoE
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