28/04/2025

Life with haemophilia can be challenging but advances in science are helping people with haemophilia to lead active and fulfilling lives.

Haemophilia is a family of rare genetic blood disorders caused by a clotting factor deficiency, which prevents normal blood clotting.¹ People with haemophilia therefore have increased risk of bleeding, especially into the joints, which can lead to permanent joint damage over time.¹

There are two main types: haemophilia A and haemophilia B. Though their symptoms are similar, they differ based on which clotting factor is missing or deficient.² Haemophilia A is caused by a lack of clotting factor VIII, whilst haemophilia B is caused by a lack of clotting factor IX.² This distinction is important for how each type of haemophilia is managed and treated.

In the UK, there were more than 11,800 people living with haemophilia A or B in 2023/2024.³

The condition impacts more than 800,000 people worldwide ² and is mostly diagnosed in early childhood, although it can be diagnosed in later life.⁴

Sometimes known as Haemophilia C, ‘Factor XI deficiency’ is another bleeding disorder.⁵ The condition is rarer than Haemophilia A and B with a distinct bleeding pattern and no obvious symptoms. This type is more common amongst the Ashkenazi Jewish population.⁵

Acquired Haemophilia is an extremely rare autoimmune disorder, caused by the body attacking the clotting factor proteins in the blood.⁶ Prompt diagnosis and appropriate treatment are crucial for managing the severe bleeding associated with acquired haemophilia.⁶

For decades, the most common treatment approach for haemophilia A and B has been factor replacement therapy, which replaces the missing clotting factors.⁷ Factor replacement therapies increase the amount of clotting factor in the body to levels that improve clotting, resulting in less bleeding.⁷

Living with haemophilia can be challenging, but advancements in treatments have enabled patients to self-administer their factors at home instead of in hospital, minimising time spent off school or work.⁷ Despite this, many people with haemophilia report that treatment can still be difficult and disruptive; a recent survey of people living with haemophilia, covering six European countries, found lack of time for treatment and convenience were among the leading reasons for not using the prescribed amount of clotting factor or skipping treatment administration.⁸ It’s therefore important that scientists continue to strive for more manageable therapies to address these challenges.

In addition, around 30% of people with severe haemophilia A, 9% with mild to moderate haemophilia A and 3% of those with haemophilia B develop ‘inhibitors’.⁹ These are antibodies produced by the body’s own immune system which stop the clotting factors from working.⁹ However, there are other treatment options available, and scientists are investigating new therapies for people with this response.¹⁰

Contrary to common misconceptions, people with haemophilia can often participate in physical activities, including sports, but should do so under the guidance of their healthcare team - they can identify which specific activities are suitable for the individual, guide them on how to safely engage in physical exercise and provide advice on risk management strategies.¹¹ With the right precautions and support from their medical team, many people with haemophilia can enjoy the benefits of participating in sports and fitness.¹¹

Furthermore, some people may be able to get tattoos or body piercings, but this requires careful discussion with their healthcare providers.¹² The treatment team can advise on the potential risks and help implement the necessary precautions, such as using antimicrobial solutions, sterile needles, and proper wound care, to minimise the chances of complications from these procedures.¹²

The key is for individuals with the disease to work closely with their haemophilia treatment centre and follow their guidance on how to safely engage in a wide range of everyday activities, while managing the risks associated with the condition.

There are charities, such as The Haemophilia Society, that are there to support those with haemophilia and their families, each with resources and information pages about the condition and personal stories from others in the haemophilia community. Although haemophilia is currently incurable, with adaptations in treatment and the right precautions and support from their healthcare team, many people with haemophilia can lead active and fulfilling lives.

Pfizer has been committed to haemophilia for more than 40 years, and we are continuing to build on this legacy with a goal to deliver the next generation of medical innovation and address the unique needs of each person living with haemophilia along their treatment journey.

As part of our commitments to equitable care, we fund The World Federation of Haemophilia (WFH) Twinning Programme, which fosters partnership and knowledge sharing between haemophilia treatment centres, patient organisations, and youth groups across high income, middle income and low income countries.¹³ Through workshops, training sessions, and shared experiences, healthcare professionals in middle and low income countries have gained access to the latest clinical practices, diagnostic techniques, and treatment protocols. In turn, “twin” organisations in developed nations have gained valuable insights into resource-limited settings.¹³

More broadly we are committed to working to advance treatment options and help people living with haemophilia get the care they need and deserve.