Tools library and support

Confidence involves feeling certain in your abilities. For people with haemophilia understanding, monitoring and managing their haemophilia with their care team is an important step towards confidence.

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.

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.

To prevent or stop progression to joint damage, it is important to intervene early to stop joint bleeds and break out of the cycle of pain.

Download this booklet to learn more about haemophilia B and read about stories and personal goals of people with haemophilia B

Tips on helping your partner through emotional challenges

Quick tips on helping your partner maintain and improve their joint health

Pain is the body’s way of saying something isn’t quite right – a warning sign that damage is occurring or about to happen.
Many people with haemophilia have their own personal experience of pain. However, it should not be considered the ‘norm’.
Pain can be managed and prevented.

Your voice matters in your haemophilia care, even if it feels challenging. Advocating for yourself is a key part of navigating this process, so it’s important to be aware of how to engage in your care and make your voice heard - before, during and after.

Caring for someone with haemophilia can be a complex journey, but with the right knowledge and support, you can make a significant impact. Read on for insights and advice to help you navigate the challenges and ensure your loved ones receive the best care possible.

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

This guide covers what haemophilia is and guidance for teacher´s on how to deal with major and minor bleeds in children with haemophilia.

Discover what liberation means to you — in just 3 minutes. Answer a few simple questions and download a personalised plan and guide to support you in the next consultation with your haemophilia care team — no sign-up required.

As teenagers with haemophilia grow older and become more independent from the adults who have been managing their haemophilia for them, it is important for them to approach this transition with patience and with the support of those around them.

Hugo with an H is a picture story for children about the feelings, fears and dreams of a boy with haemophilia. It’s a great way to learn everything about haemophilia, encourage teamwork, empathy and share values.

Letting go can be one of the greatest challenges for parents, especially when a child has haemophilia. Yet giving them the freedom to explore life on their own terms is an important step in building confidence and resilience.

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

Watch as Tim and Jon, who both have haemophilia, embark on a journey to fitness. This fun video covers building up gently, setting realistic milestones, and watching for the early signs of joint bleeds.

Protecting your joints now so you can continue to do what you love in the future is crucial for people with haemophilia. This short animation explains what joint bleeds are, and why joints need protecting.

A simple bike analogy explains what joint bleeds are, and how they can lead to joint disease in people with haemophilia.

Haemophilia doesn’t have to stop you from doing amazing things. Watch this short animation video to find out what you can do to try and realise your potential.

Explaining haemophilia to friends can feel daunting, but it doesn’t have to be. Sometimes learning how to give a simple explanation can make all the difference.

In this episode of our Podcast, Jay and Rich discuss home life and mental health.

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