Haemophilia can influence every aspect of everyday life. Each day can be shaped by constant risk-assessments, adjusted plans, weighing activities and managing unpredictability – which quietly chip away at confidence and independence.1
The invisible impacts are rarely recognised but strongly felt.
By seeing haemophilia for what it truly is, and standing together to rewrite the story, we can create real, lasting change.
Discover how we can bring Disruption for Good to the people who need it most →
The reality
Haemophilia is a rare, lifelong bleeding disorder that impairs the body’s ability to form blood clots.2 People with haemophilia do not bleed more quickly, but they do bleed for longer.2 In severe cases, bleeding can occur into joints and muscles, even without an injury. 2
Up to 66% of people with haemophilia report living with pain.
But the physical impact is only part of the story.1
The hidden impact
Many of the emotional and social consequences remain invisible. Isolation. Internalised stress. Feeling dismissed or misunderstood. Outdated beliefs still shape how people respond to those living with the condition.1,3
Awareness of haemophilia in the UK remains low. Misunderstandings can unintentionally create stigma, especially in schools and workplaces.1,3,4
When the full picture is not understood, unnecessary barriers such as exclusion from activities, reduced confidence in the workplace, or missed opportunities at school can remain in place.
Disruption to everyday life can knock confidence, impact mental health and lead to loneliness.1 But within disruption, there is also resilience. There is courage. There is determination. Disruption does not always need to be negative.
Together, we can challenge perceptions of haemophilia and spotlight the remarkable things people living with the condition can achieve.
Together, we can disrupt misconceptions, stigma and lack of awareness by encouraging people to tune in and listen more.
We believe awareness begins with understanding. Because when people understand haemophilia, they respond with greater empathy, confidence and support – unlocking potential rather than limiting it.
By seeing haemophilia for what it truly is, and standing together to rewrite the story, we can create real, lasting change.
This is Disruption for Good.
Through this, we are:
- Shining a light on the true impact of haemophilia
- Changing the way haemophilia is understood
- Empowering the haemophilia community, and those closest to them, to drive lasting change.
Disruption for Good is designed to redefine how haemophilia is understood. We are pivoting away from negativity and towards a more optimistic and supportive conversation around haemophilia. We are building understanding before awareness and reframing haemophilia as an ongoing human experience that deserves empathy, visibility and meaningful support. We are equipping families, teachers, employers, colleagues and communities with the knowledge and tools they need to better support people living with haemophilia.
Real progress begins when everyone affected by haemophilia feels part of the movement for change.
Disrupt the Assumption – Women
Haemophilia is often described as a “male condition”. As such, many women feel their experiences are overlooked, questioned or minimised.3,5
Women bleed differently. But haemophilia is still too often understood as the same for everyone affected.3,5
Explore how we are challenging assumptions and supporting women to speak confidently about their condition.
Disrupt the Limits – Children
Children with haemophilia have big dreams. We need a world that believes they can achieve them.
Discover how we are helping families, schools and peers better understand the condition.
Explore more soon
Disrupt the Conversation – Men
Men with haemophilia are often visible clinically, but can be silent emotionally.1,6
Find out more on how we are encouraging open conversations around the impact of their condition – tackling isolation, resilience and mental health.
Explore more soon
Disruption for Good has been shaped in consultation with The Haemophilia Society.
Through authentic consultation and lived experience insights, we are ensuring that our messaging reflects real challenges and resonates with the community.
By uniting our networks, we can amplify understanding and create meaningful, lasting change together.
Haemophilia Scotland. Haemophilia Scotland Needs Assessment. Edinburgh: Haemophilia Scotland; 2023. Available from: https://haemophilia.scot/wp-content/uploads/2023/08/Haemophilia-Scotland-2023-Needs-Assessment-Final-Report_Complete.pdf [Accessed October 2026]
The Haemophilia Society. Understanding haemophilia. London: The Haemophilia Society; 2023 Feb. Available from: https://haemophilia.org.uk/wp-content/uploads/2023/02/THS_A5_understanding_JCv1-PRINT89.pdf [Accessed October 2026]
World Federation of Hemophilia. Carriers and women with haemophilia. Dublin: Irish Haemophilia Society; 2012. Available from: https://haemophilia.ie/wp-content/uploads/2017/02/Carriers-and-Women-with-Haemophilia.pdf [Accessed October 2026]
Cassis FRMY. Psychosocial care for people with hemophilia. Montreal: World Federation of Hemophilia; 2023. (Treatment of Hemophilia; No. 44). Available from: https://www1.wfh.org/publications/files/pdf-1198.pdf [Accessed October 2026]
Sanigorska A, Chaplin S, Holland M, Khair K, Pollard D. The lived experience of women with a bleeding disorder: a systematic review. Res Pract Thromb Haemost. 2022;6:e12652. doi:10.1002/rth2.12652
Reinicke K, Søgaard IS, Mentzler S. Masculinity challenges for men with severe hemophilia. Am J Mens Health. 2019;13(4). doi:10.1177/1557988319872626