Haemnet

24/11/2025

What do stones and slingshots have to do with care in Uganda?

In the fight for better diagnosis and care, Agnes Kiskaye of the Haemophilia Foundation of Uganda describes the addition of recombinant factor concentrates and emicizumab to the describe as a powerful weapon with the potential to make a big difference.

Read more about her thoughts and hopes on the : https://loom.ly/AB3rNJI

18/11/2025

11/11/2025

From anxiety and fear to taking control and making positive connections, parents in our family-focused blog series discuss life with children diagnosed with a bleedingdisorder.

Read all about it here: https://loom.ly/C45ztMwg

05/11/2025

All stories matter.

A huge thank you to everyone who shares their experiences with us in our research studies, blogs, podcasts and beyond. Individual stories really do matter when it comes to understanding what it's really like to live with a bleeding disorder — and better understanding helps drive better treatment and care.

Check out our family-focused posts on the Haemnet blog or tune into Haemcast to hear real-life stories of life with a bleeding disorder.

Visit https://loom.ly/DzLE__0 to find out more

31/10/2025

Wishing our friends, followers, colleagues and clients a spooktacular Halloween 👻🎃🕷️

30/10/2025

Debbie's son Jamie has severe A. She says the control that having treatment brings, and encouraging Jamie to ‘own’ his condition and his treatment, makes family life with haemophilia manageable. Find out more about their story in our two-part blog: https://loom.ly/SAPfk4M

22/10/2025

A paper exploring the intergenerational impact of the Contaminated Blood Scandal is newly published in The Journal of Haemophilia Practice.

Focusing on the experiences of adult children and siblings of people with affected by the CBS, the authors highlight how "The group's life paths have been severely disrupted, resulting in psychosocial and socioeconomic disadvantage that impact their children, passing trauma through generations."

They call for a trauma-informed approach to haemophilia care, and highlight a need for work to explore ways that haemophilia centres can meet this need, "from contraception to the grave".

Available to read, open access, here: https://loom.ly/keKXHlU

17/10/2025

The latest episode of is a story of inspiration and hope, and resonates loudly with with the theme of next year's World Hemophilia Day, 'Diagnosis: First step to care'.

Stream or download and listen to Dr Kate Khair in conversation with Morris Okello in 'Banana sap, mangos and factor IX: a Ugandan haemophilia B journey: https://loom.ly/p27kavc

13/10/2025

What links banana sap, mangos and haemophilia?

Find out by joining us for the latest episode of , in which Morris Okello speaks to Dr Kate Khair about his journey with haemophilia B.

Available here: https://loom.ly/p27kavc
Or on your favourite podcast platform.

10/10/2025

Did you know October 10th is Hereditary Factor X Deficiency Awareness Day?

Factor X deficiency (FXD) is an ultra rare bleeding disorder, affecting around 1 in a million people worldwide, many of whom are unable to access treatment with factor X concentrate.

Check out Brian Branchford's commentary on two FXD case studies published in The Journal of Haemophilia Practice: https://doi.org/10.2478/jhp-2023-0019

08/10/2025

Individual stories matter.

Everything we do around bleeding disorders comes down to people who live with them, and people who care for people who live with them.

A huge thank you to everyone who shares their experiences with us in our research studies, blogs, podcasts and beyond.

Want to know more? Check out our family-focused series on the Haemnet blog, tune into Haemcast on your favourite podcast channel, or get in touch to find out more about how your story can help our research: https://loom.ly/vkd8zoE

30/09/2025

As the parent of a child with a bleeding disorder, how can you help make their life as 'normal' as possible?

In part of two of our latest family-focused blog, we catch up again with Debbie and her son Jamie, who lives with severe haemophilia A. Debbie discusses encouraging Jamie to 'own' his haemophilia, school trips and family holidays, and why she thought it was important to participate in student doctor exams. Read more here: https://loom.ly/mSM9vzo