The Haemophilia Society UK

The Haemophilia Society UK We are a community that makes each other feel stronger every day. Membership is completely free!

Ahead of tomorrow’s Backbench Business Debate on the Infected Blood Compensation Scheme, we’ve been speaking with MPs an...
17/06/2026

Ahead of tomorrow’s Backbench Business Debate on the Infected Blood Compensation Scheme, we’ve been speaking with MPs and parliamentary staff about the urgent changes that are still needed.

These discussions are an important step in making sure the voices of those affected continue to be heard.

We’ll be watching closely as the debate unfolds and will keep pushing for a compensation scheme that is fair, transparent and works for everyone affected.

Watch the debate live here: https://whatson.parliament.uk/commons/2026-06-18/

Last weekend, members of our community came together for our VWD and Me event in Liverpool - a space to connect, share e...
16/06/2026

Last weekend, members of our community came together for our VWD and Me event in Liverpool - a space to connect, share experiences and learn more about living with von Willebrand disorder.

Thank you to everyone who took part, and to our guests, speakers and panellists whose knowledge and lived experiences helped drive these conversations forward.

For Elizabeth living with severe haemophilia A often meant sitting on the sidelines, while questions around her identity...
11/06/2026

For Elizabeth living with severe haemophilia A often meant sitting on the sidelines, while questions around her identity left her feeling isolated and unsure where she belonged.

Now 26, Elizabeth is sharing her experience as a trans woman with haemophilia to encourage more open conversations about identity, healthcare and visibility within the bleeding disorders community.

Despite the challenges she has faced, Elizabeth hopes her story will reassure others who may be struggling with their identity or feeling alone.

“If you’re worried things aren’t going to work out, one way or another they will. Even if things are difficult, you’ll still be happier for being yourself.”

Read our full interview with Elizabeth now: https://haemophilia.org.uk/living-as-a-trans-woman-with-haemophilia/

Last week, our Chief Executive Kate Burt gave evidence to the Public Accounts Committee as part of its investigation int...
10/06/2026

Last week, our Chief Executive Kate Burt gave evidence to the Public Accounts Committee as part of its investigation into government compensation schemes.

The hearing brought together voices from across several compensation schemes, including infected blood. Alongside Kate were witnesses Sir Alan Bates, Rev Clive Foster MBE and Peter Gibson, to discuss the challenges facing those seeking justice and redress.

As the committee continues its inquiry, we remain focused on ensuring the voices of those affected by the infected blood scandal are heard and that compensation is delivered fairly, transparently and without further delay.

This Pride Month we're celebrating members of our community whose stories have helped drive change.Many of you will know...
04/06/2026

This Pride Month we're celebrating members of our community whose stories have helped drive change.

Many of you will know Mark Ward, campaigner, advocate, author, and the Haemophilia Society's first LGBT+ Ambassador.

Born with severe haemophilia A, Mark was infected with HIV through contaminated blood products as a child and told he had only a few years to live. Instead, he went on to build a life filled with purpose: championing the rights of people affected by contaminated blood, advocating for LGBT+ and disability communities, and helping others find strength in their own stories.

In his autobiography Bleeding Fabulous Mark shares his journey of resilience, identity, love and activism - from feeling isolated as a young gay man with a bleeding disorder to becoming a powerful voice for change.

‘I want them to think that if I can do it, they can too.’

02/06/2026

Yesterday, Kate Burt, Chief Executive of the Haemophilia Society, told a Public Accounts Committee hearing today that the Infected Blood Compensation Authority’s (IBCA) claims systems seem to have ‘completely stalled’.

She said IBCA had inherited a ‘flawed’ compensation scheme because the government created it in secret without consulting the infected blood community. Kate was contributing to the committee’s investigation into government compensation schemes. 

Other members of the evidence panel were Sir Alan Bates, Founder, Justice for Subpostmasters Alliance, Rev Clive Foster MBE, Windrush Commissioner, Office of the Windrush Commissioner and Peter Gibson, Chief Executive, Fighting with Pride.

The committee is investigating the ‘operational performance’ of seven government compensation schemes, including the Infected Blood Compensation Scheme.

A second evidence session featured Sir Professor Jonathan Montgomery, Professor of Health Care Law, University College London, chair of the government’s expert group which shaped the Infected Blood Compensation Scheme. 

You can watch the hearing back through parliament tv (link in bio)

Happy Pride Month! 🌈At The Haemophilia Society, we believe every body deserves care and visibility.This month, we’ll be ...
01/06/2026

Happy Pride Month! 🌈

At The Haemophilia Society, we believe every body deserves care and visibility.

This month, we’ll be celebrating LGBTQ+ people in the bleeding disorders community, sharing stories, challenging misconceptions and highlighting the importance of inclusive healthcare for all.

Whether you’re living with a bleeding disorder, supporting someone who is, or working to make healthcare more inclusive, Pride is a reminder that everyone deserves to be seen, heard and respected.

Join us throughout June as we celebrate our LGBTQ+ community and amplify the voices and experiences that help make our community stronger.

Ahead of our VWD and Me event on 13 June, we caught up with Robyn, one of our Young Ambassadors, to hear why she thinks ...
01/06/2026

Ahead of our VWD and Me event on 13 June, we caught up with Robyn, one of our Young Ambassadors, to hear why she thinks connecting with others and learning more about VWD is so important.

Whether you're living with von Willebrand disorder or care for someone who is, VWD and Me is an opportunity to learn more about treatment, wellbeing and staying healthy, while meeting others who understand the realities of life with VWD.

🗓️ 13.6.26
📍 Hilton, Liverpool City Centre
🕰️ 9am - 5pm

Register for your place now: https://www.eventbrite.co.uk/e/vwd-information-day-tickets-1986441601303?aff=oddtdtcreator

Address

52B Borough High Street
London
SE11XN

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Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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