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.

Interested to know more about our episode 'Veins, verse and voices'?On the Haemnet blog, Chair of Local families with ...
17/03/2026

Interested to know more about our episode 'Veins, verse and voices'?

On the Haemnet blog, Chair of Local families with bleeding disorders, Lisa Steadman, explains more about the background to the writing workshops that resulted in Bleeding and Belonging, a collection of poems expressing "the emotions, uncertainties, and resilience that shape life with bleeding disorders".

👀 Read Lisa's blog here: https://loom.ly/8ZBL_9s

🎧 Listen to the podcast here: https://loom.ly/d6YUipg

📕 Read the poems here: https://loom.ly/JPyoVFo

13/03/2026

Presenting the top ten articles for February in Bleeding Disorders: Care & Practice. Patient experience and quality of life continue to feature — as does our most read article ever, 'What is a nurse-led service?'

Why not explore our archives here: https://loom.ly/uIXcNF8

10/03/2026

Did you know the new season of has started?

✍️ In the first of a series of collaborative episodes with Local families with bleeding disorders, members of the Local families group discuss how poetry helped them explore experiences, hopes, expectations and worries linked to the bleeding disorders that affect their families.

📕 Many of the poems written during the project are now published as an eBook, Bleeding and Belonging.

🎧 Listen to 'Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard' on your favourite podcast platform, or tune in here: https://loom.ly/d6YUipg

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 !

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