It’s marathon week and we’re incredibly lucky to have a fantastic team of runners representing the Haemophilia Society (THS) in this year’s race. We’ve been introducing them over the past few weeks on our socials and wanted to take the opportunity to find out a little more about them and their reasons for running for us. So, here’s the first half of #TeamTHS: Matt Sutton Over the past couple of years, Matt has taken part in an astounding 10 swimming and running events to raise money for THS. Inspired by his grandma and uncle, Matt took it upon himself to test his limits and take on a range of ..read more

We’re launching a survey to find out more about dental care for people with a genetic bleeding disorder. We want to know how you access dental care as well as information, such as the impact of oral bleeding, to build up a clearer picture of how dental services can be improved. The survey is being conducted in partnership with Nordic Pharma, which will donate £2 to the Haemophilia Society for every member who completes the questionnaire. Finding a dentist can be a challenge for people with a genetic bleeding disorder, but, aside from tooth extractions and surgery, most work can be done by a lo ..read more

The Haemophilia Society is deeply saddened by the sudden death of Simon Hamilton, Chair of Haemophilia Northern Ireland. Clive Smith, Chair of the Haemophilia Society, described Simon as a compassionate and steadfast colleague in the long battle for justice for people infected and affected by contaminated blood products. We send our condolences to the Hamilton family and the bleeding disorder community in Northern Ireland. The post Simon Hamilton, Chair of Haemophilia Northern Ireland appeared first on The Haemophilia Society ..read more

We are offering one of our members the chance to join the Haemophilia Society (THS) as a representative of the UK bleeding disorders community at the World Federation of Hemophilia (WFH) 2024 World Congress in Spain. We’re looking for someone with a genetic bleeding disorder, or the parent of a child with a bleeding disorder, to take part in this global conference which is held in Madrid from 21-24 April 2024. The WFH Congress brings together patient organisations, clinicians and people working within the bleeding disorders community from across the world. The event is an opportunity share kno ..read more

While most of us were trying to keep warm and dry in November, 18-year-old Jack braved the elements to run at least 10 kilometres every day to raise money for the Haemophilia Society. Jack, who has moderate haemophilia, clocked up 321 kilometres during November and has so far raised £1,380. It’s not too late to boost his total – his fundraising page is open until Christmas Day. As a child, Jack attended one of our Youth Camps in the Lake District and really enjoyed the experience. He said: ‘It was the first time I’d been around people with haemophilia and it was good fun. It made me speak out ..read more

We’re excited to announce a twinning project with the Malta Bleeding Disorders Society which will strengthen the bonds between our organisations and give us an opportunity to share expertise. The partnership has been formally recognised and approved by the World Federation of Hemophilia (WFH) which will support the project for four years. There are about 100 people living with a genetic bleeding disorder in Malta and many do not have access to the most up-to-date treatment and care. Some treatment for haemophilia still uses plasma-derived products, for example, and the new drug Hemlibra (Emici ..read more

We have changed the way we review medical and scientific information by widening the range of experts who serve on our advisory panel. Our new Medical and Scientific Advisory Group (MASAG) contains volunteer representatives from across bleeding disorder care, including specialisms such as dentistry and physiotherapy as well as specialist nurses and consultants. The group replaces our previous advisory panel, called the Clinical Advisory Group, and aligns with global bleeding disorder good practice. The European Haemophilia Consortium (EHC) has also widened the scope of its advisory panel. MASA ..read more

This winter, help us support people with a bleeding disorder who are struggling with the rising cost of living. High food and energy bills have had a crippling effect on many household budgets, resulting in stressful decisions and drastic cutbacks which can have a serious impact on physical and mental health. We’re setting up the Stronger Together Fund to give our members urgent financial support when they need it most. The fund will offer small grants for essentials such as: Travel to centres Equipment, such as a small fridge to store treatment Replacement bedding and clothes Period products ..read more

It started with a half marathon on World Haemophilia Day and, 10 gruelling event later, Matt Sutton’s epic fundraising campaign is about to cross the finish line. Matt has already raised over £2,300 for the Haemophilia Society by completing four running half marathons, five swimming half marathons and a host of other swimming endurance events over the last 18 months. On 17 December, he’ll complete his last event, the Richmond Half Marathon, and is hoping for a final burst of support to reach £3,000 in donations. Matt said: ‘It’s been a lot, I’ve injured myself twice! But it’s been great and I ..read more

We’re thrilled to introduce two new trustees who will help to shape and provide strategic direction to the Haemophilia Society. Lisa Bagley and Stacey McGeown were introduced as new trustees at our Big Get-Together conference in Leeds on 18 November and join the board immediately. Many of you will remember Lisa, who has previously served two three-year stints on the board and returns with fresh ideas and energy for another term. Lisa is a carrier of haemophilia A and has close family members living with a bleeding disorder. Lisa works as a technology consultant and manages large teams deliver ..read more