Haemnet

Haemnet 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.

On International Women’s Day 2026, we want to give visibility and a voice to women and girls affected by a bleeding diso...
08/03/2026

On International Women’s Day 2026, we want to give visibility and a voice to women and girls affected by a bleeding disorder.

👫 Erik von Willebrand described the bleeding disorder he identified as affecting both men and women.

👧 Factor V deficiency was first identified in a three-year-old girl.

👩‍🍼 The inheritance patterns of different bleeding disorders show that women can be affected.

🤷‍♀️ So why are women and girls with a bleeding disorder still struggling to access diagnosis, treatment and care?

Read our blog here: https://loom.ly/lujMOIw

05/03/2026

Out today: the first in the new season of , in collaboration with Local families with bleeding disorders!

📕 In 'Veins, verse and voices', we hear about the poetry project that resulted in the powerful new collection, Bleeding and Belonging.

✍️ Members of Local families with bleeding disorders talk about the online poetry workshops that helped them explore their experiences and express their hopes, expectations and worries about the bleeding disorders that impact their families.

🎧 Listen via your favourite podcast platform or tune in here: https://loom.ly/d6YUipg

Read Bleeding and Belonging here: https://loom.ly/JPyoVFo

03/03/2026

The new season of Haemcast is about to launch!

We'll be exploring the ups, downs, ins and outs of family life with a rare bleeding disorder in collaboration with Local families with bleeding disorders.

Stay tuned…

https://loom.ly/ADEZ6qQ

01/03/2026

1 March is Awareness Day.

Glanzmann Thrombasthenia — or Glanzmann's — is one of the rarest of the rare , affecting around 2 in a million people. Timely diagnosis is essential to ensure the right treatment and management. But even then, bleeding symptoms remain problematic and can impact all areas of life.

Our Glanzmann's 360 (GT360) study explored the lived experience of Glanzmann Thrombasthenia with almost 120 participants. Most had experienced at least one bleed in the previous week. Most women experienced heavy and/or prolonged periods. Anaemia and fatigue were common.

There is still more to do to ensure that everyone impacted by Glanzmann's can live well.

If you live with Glanzmann Thrombasthenia or care for someone with Glanzmann's, what are the most important things you want other people to understand?

For Rare Disease Day 2026, we want to shine a spotlight on ultra-rare bleeding disorders — factor deficiencies, Glanzman...
28/02/2026

For Rare Disease Day 2026, we want to shine a spotlight on ultra-rare bleeding disorders — factor deficiencies, Glanzmann Thrombasthenia, Bernard-Soulier Syndrome, Afibrinogenemia…

Everyone affected by a rare disease — no matter how rare — deserves the chance to live well. Our work focuses on better understanding lives lived with a rare or ultra-rare bleeding disorder to help make that possible.

Rare or ultra-rare, being listened to and understood is key to getting the right care.

Read our Rare Disease Day blog, highlighting the experience of Helen, who lives with Factor V deficiency: https://loom.ly/hcPNBXE

Listen to Helen in conversation with Dr Kate Khair on Haemcast: https://loom.ly/1uUvUEc

16/02/2026

Revealed: our journal's top 10 articles for January 2026!

It's another international selection, with papers on different aspects of treatment experience, women affected by haemophilia, parent experiences, and nursing.

Available open access in Bleeding Disorders: Care & Practice: https://loom.ly/uIXcNF8

We have a new Editor-in-Chief!We hope you'll join us in offering a warm welcome for Maria Santaella to the editorship of...
10/02/2026

We have a new Editor-in-Chief!

We hope you'll join us in offering a warm welcome for Maria Santaella to the editorship of Bleeding Disorders: Care & Practice.

https://loom.ly/Z_wuqf8

Symposia on prophylaxis in and on redressing the balance of treatment innovation in including , deficiency and ...
05/02/2026

Symposia on prophylaxis in and on redressing the balance of treatment innovation in including , deficiency and were among our highlights yesterday at . If you're there, don't forget to visit our posters from our VWD 360, FVIID 360 and Cinderella studies.

05/02/2026

Ready for another day at !

If you're attending , don't forget to come and say hello at this evening's welcome and poster reception!Wednesday 4 Feb...
04/02/2026

If you're attending , don't forget to come and say hello at this evening's welcome and poster reception!
Wednesday 4 February, 6.30-7.30pm

We're looking forward to today's programme at the congress!Join us this evening at the welcome reception and poster pr...
04/02/2026

We're looking forward to today's programme at the congress!

Join us this evening at the welcome reception and poster presentations. Alongside posters with results from our VWD360 study and identifiers of disease burden in women from the Cinderella study, we'll be presenting our FVII deficiency study poster, which is up for a EAHAD poster award.

We've arrived!
03/02/2026

We've arrived!

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