Who We Are
We are The Haemophilia Society
We are the only UK-wide charity for everyone affected by a bleeding disorder: a community of members, supporters and healthcare professionals. Our work is driven by a small staff team, based in London and working alongside volunteers from all over the UK. We are governed by a board of trustees.
As a health charity, we work to provide easy access to information and opportunities, influence national policy and practice to make the care and treatment of bleeding disorders consistent, effective and accessible to all and enable the voices of all people with bleeding disorders to be heard.
Our strategy sets out our goals, aspirations and plans for 2015-18. It aims to make sure that everything we do improves the lives of people affected by a bleeding disorder in the UK today so we can continue to provide help and support for many years to come.
The strategy and plan was launched at our annual general meeting (AGM) in October 2013, and reflects the needs and concerns of members and local groups. We worked with our members who attended our AGM and conference in November 2014 to refine and prioritise our activity and services in the coming years.
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 genetic bleeding disorder has the opportunity to live a fulfilled life.
We aim to inform, advocate for and empower anyone affected by a genetic bleeding disorder.
Everything we do is underpinned by our values. We strive to always be transparent, professional, pioneering and supportive.