The Haemophilia Society – Together for life
Living with a bleeding disorder is never black and white. And it’s not all blood-red either.
The Haemophilia Society (THS) is the only UK-wide charity and free membership organisation for everyone affected by a bleeding disorder. We have over 5,000 members.
One in 2,000 men, women and children in the UK have a diagnosed bleeding disorder, which are a group of conditions, including haemophilia and von Willebrand disorder, that result when the blood cannot clot properly. As many as a third of bleeding disorder diagnoses have no known family history and can be the result of a random gene mutation. This means a bleeding disorder diagnosis can come completely out of the blue.
Life after diagnosis may start out hard, but we learn by doing, making mistakes, asking questions and surrounding ourselves with people who understand. Then, slowly, it just becomes life again.
At THS we want to empower everyone affected by a bleeding disorder to live life to the full, whatever stage you are at. We offer free member events, a local group network and online communities to share advice and experiences, as well as the latest news and access to specialist resources.
Many people with a bleeding disorder are undiagnosed or are diagnosed late, because of a lack of understanding about these rare conditions. Our community rallies together to raise awareness about bleeding disorders, giving hope to everyone affected.
THS also campaigns and advocates for what matters to our community; lobbying government, the NHS and clinicians to demand excellent care and safe and effective treatment, which is available to everyone affected by a genetic bleeding disorder.
The values we live by:
Informative and supportive – we help our members throughout their lives.
Approachable and inclusive – we put our members at the heart of everything we do.
Inspiring and engaging we deliver a positive impact for our members and the community.
In 1947, two men with haemophilia met in a hospital waiting room and realised that a mutual support group was needed to bring people together. More people came on board to help, and in 1950, The Haemophilia Society was formed. In 1964, the Society was registered as an independent charity, and we’ve been working UK-wide to support people with bleeding disorders ever since.
Over the decades, a lot has changed in the diagnosis, care and treatment of bleeding disorders. We are proud of all that has been achieved over the years by members of our community working together, and thankful that children diagnosed with a bleeding disorder today can expect to live longer and healthier lives as a result.
While we are fortunate to live in a country where people have access to factor treatment and good standards of care, there’s still a long way to go before the majority of our members are able to lead the lives they choose.
Over the years, the contaminated blood scandal has been a major part of our work. The Society has campaigned for justice for the thousands of lives already lost, and many more members and their families who are living with the daily legacy of pain, psychological damage and financial hardship.
We contributed to both the Archer Inquiry (2007-2009), and Scotland’s Penrose Inquiry (since 2009, final report published in 2015). We continue to act as national advocates for all those affected, working alongside key campaign groups, and as secretariat to Westminster’s All-Party Parliamentary Group (APPG) on haemophilia and contaminated blood.
Now, a new generation needs our help and support, and ongoing medical research and far-reaching NHS changes present new opportunities and fresh challenges. Today, social media and digital technologies are helping to connect our community more easily, highlighting the diversity of needs and experiences among the people and families we support.
2015 marked our 65th birthday, and we want to share our history in even more detail. If you’ve information and anecdotes to share, please get in touch – we’d love to hear from you.
However much may have changed, the vision and mission of The Haemophilia Society today isn’t so different to what our founder members felt was needed all those years ago. We hope that their legacy remains in our welcoming, inclusive culture and practical, ‘can-do’ approach.
With thousands of members and a range of services tailored to the needs of around 30,000 people in the UK with a bleeding disorder and their families, we can promise that, whatever lies ahead, The Haemophilia Society will be on hand to help people live life well.
Anyone affected by a bleeding disorder has the opportunity to live a fulfilled life.
We aim to support each other, raise awareness and advocate on what matters to our community.
Everything we do is underpinned by our values. We strive to always be empowering, compassionate and resilient.