Group of people holding hands upwards

Finding community support and tools library

Part of living with haemophilia is understanding how best to manage your condition to fit in with your lifestyle. Having access to haemophilia information, guidance, tools and support can help you do just that.

This section of the website contains a host of educational and support resources to help empower you and provide you with a greater knowledge and understanding of what haemophilia is and how best to manage it — everything from educational animations, podcast episodes, and printable resources break down the ins and outs of haemophilia and what you can do to live your best life.

Close to you

To find a patient support group or organization close to you, you can visit the following websites:

European Haemophilia Consortium: Membership • European Haemophilia Consortium (EHC)
World Federation of Hemophilia: Find Local Support | World Federation of Hemophilia
Orpha.net: Orphanet : Patient organisations

All of 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 advice tailored to the needs of haemophilia patients.
From expert tips to improve daily routines to downloadable guides, interactive tools, and inspiring stories in our podcasts & videos. Explore these resources to discover smart, effective solutions for managing your health and enhancing your quality of life.

Animations

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.

Two men are running outside in the nature

Finding community support & tools library

Get active and feel great with haemophilia

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.

Two friends in a boat on a lake

Finding community support & tools library

Strong joints, more freedom

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.

young child playing with his bike in a park

Finding community support & tools library

What is joint disease in people with haemophilia?

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

Arrival of a bike race

Finding community support & tools library

Haemophilia or not, chase your dreams

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.

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.

Two boys playing with two balls in a park

Finding community support & tools library

You, your friends and haemophilia

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.

Podcasts

podcast

Finding community support & tools library

Living with haemophilia in young adulthood

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

podcast

Finding community support & tools library

Growing up with haemophilia

Paul and Axelle are the parents of a little boy with haemophilia A, and Rich was diagnosed with severe haemophilia A as a child.

podcast

Finding community support & tools library

Work, study and personal goals

In this episode about living with haemophilia in young adulthood, Jay and Rich explore the challenges of work, studies and reaching your goals.

podcast lifestyle

Finding community support & tools library

Haemophilia lifestyle and personal identity

In this episode, Jay and Rich share candid conversations about life with haemophilia.

podcast

Finding community support & tools library

Living well with haemophilia

In this podcast episode, Paul, Rich and Axelle talk about achieving a balance between managing the risks of haemophilia and leading a fulfilling life — either as a person with haemophilia or as a parent.

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.

Printable tools

Breaking cycle of pain

Finding community support & tools library

Breaking out of the haemophilia pain cycle

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.

booklet : what is haemophilia B

Finding community support & tools library

Booklet: Living with Haemophilia B

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

flyer about partner mental health

Finding community support & tools library

Supporting your partner’s mental health

Tips on helping your partner through emotional challenges

flyer to protect partner's joint health

Finding community support & tools library

Supporting your partner's joint health

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

infographic about pain in haemophilia

Finding community support & tools library

Infographic: Pain in haemophilia

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.

Booklet about haemophilia

Finding community support & tools library

 Making the most of every haemophilia appointment

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.

booklet on haemophilia caregiver

Finding community support & tools library

Your voice, their "care" downloadable guide

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.

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.

Teacher guide sheet

Finding community support & tools library

Supporting children with haemophilia: a teacher’s guide

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

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.

Booklet for teenagers

Finding community support & tools library

Haemophilia toolkit for teenagers

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.

Child book about haemophilia

Finding community support & tools library

‘Hugo with an H’ haemophilia picture story

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.

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NP-40110 created January 2025