Man talking to healthcare professional
Managing your care

Haemophilia treatments and standard of care

Every haemophilia patient is different - when it comes to deciding on treatment and managing your care, it’s important to identify what is important to you, what motivates you in your day-to-day life, and what you want to prioritise.

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.
video of a medical consultation
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.*
 Side profile of a person sitting by a camping tent looking into the distance while the sun shines behind them
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.
Pharmacokinetics
Finding community support & tools library

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!
infographic about haemophilia treatment
Finding community support & tools library

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.
Young child with dominos
Finding community support & tools library

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.
young sportive boy who had a knee injury
Finding community support & tools library

Understanding normalised haemostasis

Understanding factor levels is key to managing haemophilia. Watch the video below to understand how to reduce your risk of bleed and joint damage by keeping your blood factor levels high.
Liberation map graphic
Finding community support & tools library

Discover your liberation goals

What does liberation mean for you? What are the things you want to do or keep doing? Complete the Liberation Map quiz to reflect on aspects of your wellbeing that you aspire to improve so you can discuss them with your doctor and get the support you need to pursue your goals.
podcast
Finding community support & tools library

Learning how to optimise care after diagnosis

Paul and Axelle share their experience raising a child with haemophilia A, while Rich was diagnosed with severe haemophilia A as a child.

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NP-40107 created January 2025