Haemophilia Treatments & Standard of Care: Patient Insights

Below, you will find a mix of information and patient stories - from those living with haemophilia and how they feel empowered, to parents of children with haemophilia who reinforce the importance of role models and embracing life. Practical tips are also linked to help navigate conversations with your doctor and understand what protection could mean for you.

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Treatment and care

Mother and little son travel by car in mountains.Little boy sitting in car trunk while they makes a break and mother gives him a kiss.

Managing your care

Optimising haemophilia care after diagnosis

Following your diagnosis with haemophilia, it is important to understand the key aspects of your care. Knowing how to manage the impact of haemophilia on your everyday life can help you to live a life with fewer limitations.

Managing your care

Meet a haematologist

Dr Pratima Chowdary is a consultant in the Haemophilia Centre at the Royal Free Hospital in London. Here, Dr Chowdary gives some advice for people with haemophilia and their families.

Shared decision-making

Man looking at his phone smiling while sitting on outdoor steps.

Managing your care

Take control of your haemophilia

James Gorman shares his experience at 30 years of age living with severe haemophilia A. Here he writes on how people who live with haemophilia bring unique knowledge that should shape the care they receive.*

Managing your care

Deciding what you want from haemophilia treatment

Haemophilia treatment is about more than just managing bleeds. This article helps you define your treatment priorities so you can feel confident in discussing these with your care team.

Your resources

Living with haemophilia presents unique challenges, but with the right tools and knowledge, everyday life can be managed with confidence. In this section, you'll find a variety of resources and practical advices tailored to the needs of haemophilia patients.

How to protect your joints from synovitis (inflammation)

The synovial membrane surrounds the joints and contains synovial fluid that acts to lubricate the joint, helping with movement. It is important to detect synovitis (inflammation of the synovial membrane) before it leaves negative long-lasting effects.

A guide to prepare your appointment

Looking to get more out of your appointments with your haemophilia care team? Take the opportunity to go beyond routine check-ups and get more involved in making decisions around your health that can help you reach your goals.

A guide to prepare your appointment

Looking to get more out of your appointments with your haemophilia care team? Take the opportunity to go beyond routine check-ups and get more involved in making decisions around your health that can help you reach your goals.

Understanding protection in haemophilia

Understanding the behaviour of the factor inside the body can potentially help to better manage the effect of haemophilia on your life!

Finding the right haemophilia treatment for you

It’s important to understand what protection could mean for you and how to discuss this with your haemophilia care team.

What are clotting factor replacement therapies?

How the body uses clotting factor to form a clot to stop bleeding is different in people with haemophilia. This short animation explains the different treatments available that help people with haemophilia to form blood clots properly, and the benefits of doing so.