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.

31/10/2026

Halloween greetings from the Haemnet team
🕸️🎃👻🧙‍♀️🕷️💀🦇

28/10/2026

What happens when your effectively changes your severe to moderate or mild haemophilia?

👤 In the Learning to Live study, we compared the experiences of people who have always lived with moderate or mild haemophilia with those of people who effectively live with moderate or mild haemophilia as a result of their treatment (e.g. non-factor therapies, gene therapy).

✴️ Overall, we found that haemophilia has similar impacts on quality of life regardless of its severity — which suggests that the impacts of moderate and mild haemophilia are under-recognised.

🔴 Read the full results, open access, in Bleeding Disorders: Care & Practice.

🙏 With thanks to all those who shared their experiences with us in Learning to Live.

🔗 https://loom.ly/87m1P_8

22/10/2026

🍁 New and forthcoming articles in this month include:

🇺🇸 A case series by Escobar et al. on the use of a new bypassing agent in people with A and on prophylaxis who had major

🇬🇧 A qualitative study by Fletcher et al. exploring disparities and impacts in non-severe haemophilia

💡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

🔗 Link to journal in bio

14/10/2026

❤️ 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.

10/10/2026

💙 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.

18/09/2026

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.

Address

Brixton

Website

http://www.haemnet.com/, https://www.bdcpjournal.com/bdcp, https://creators.spotify.com/pod/profile/haemnet/

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