Group of people holding hands upwards

Tools library and support

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.

Printable tools

Synovitis

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.
my voice, my care

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.
Breaking cycle of pain

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

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

Supporting your partner’s mental health

Tips on helping your partner through emotional challenges
flyer to protect partner's joint health

Supporting your partner's joint health

Quick tips on helping your partner maintain and improve their joint health
infographic about pain in haemophilia

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

 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

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 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

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

Create a ‘Liberation Map’ for your haemophilia care

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.
Booklet for teenagers

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

‘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.

Animations

Letting your kid go

Giving your child with haemophilia independence

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.
Pharmacokinetics

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!
Young child with dominos

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

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

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

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

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

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

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

Living with haemophilia in young adulthood

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

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

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

Haemophilia lifestyle and personal identity

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

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

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.

Close to you

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

©2025 Swedish Orphan Biovitrum AB (publ) – All rights reserved
NP-40110 created January 2025