The Haemophilia Society

To mark Rare Disease Day, we wanted to share some findings from a recent survey our Rare and BDUC working group carried out with healthcare professionals. The aim was to get a clearer picture of the level of understanding and knowledge around rare bleeding disorders and the appetite for further training and education.

We’re honoured to have the opportunity to partner with the Royal Society of Medicine for this event. It’s set to be a great afternoon!

Are you planning a trip and unsure of how to ensure you can access the support and cover you need? From travel insurance to finding local haemophilia centres, we look at how to ensure your adventures aren't limited by your bleeding disorder. https://lnkd.in/eA-ssHdS

ICYMI - A new product for severe haemophilia A which reduces the number of treatments needed while increasing the duration of factor cover has been licensed in the UK. Sobi’s efanesoctocog alfa, known as Altuvoct or efa, is a new extended half-life factor VIII product for treatment of severe haemophilia A in anyone aged over two years. It is infused intravenously. Find out more here. https://lnkd.in/de_W3nyZ

A new product for severe haemophilia A which reduces the number of treatments needed while increasing the duration of factor cover has been licensed in the UK. Sobi’s efanesoctocog alfa, known as Altuvoct or efa, is a new extended half-life factor VIII product for treatment of severe haemophilia A in anyone aged over two years. It is infused intravenously. Find out more here. https://lnkd.in/de_W3nyZ

Ahead of International Women’s Day, the EHC Women and Bleeding Disorders (WBD) Committee is proud to introduce the survey on girls and women with bleeding disorders. In 2017, the EHC launched a survey to better understand the unique challenges faced by this often-overlooked segment of the patient population. Now, 8 years later, we’re revisiting these issues to assess the progress made and highlight areas for improvement in diagnosis, care, and support. The survey is: - Open to girls, women, and their caregivers - Focused on diagnosis, treatment, care, daily life, and support - Available in multiple languages https://lnkd.in/dsTMpK-P

The government has today published draft regulations which will give the Infected Blood Compensation Authority (IBCA) the power it needs to deliver all infected blood compensation scheme payments. The regulations build on those published last year extending the scheme to people who are affected and provide details of a 'supplementary route' for people with certain specified heath conditions, additional care costs or higher financial losses. https://lnkd.in/eXMHMerX

Places for our Medicine and Me event on Thursday 27 February are filling up so book now to be sure you don't miss out. It's free to attend and promises to be a fascinating look into the future of bleeding disorder care and treatment. Find out more here. https://lnkd.in/ei-VN2y5

As January seemingly disappeared in a flash, April will be here before we know it and that means one thing... It's time to start looking ahead to London Marathon 2025! With that in mind, meet Steve and Amy - our first two runners on #TeamTHS. https://lnkd.in/dwBr2Y9i

It's a pleasure to have a poster on display at the EAHAD Congress in Milan. The poster presents the findings of a study of the experiences of people with a bleeding disorder with dental care. With over a third of participants saying they found accessing dental care either challenging or very challenging, the study highlights a pressing need for change. Pictured: Our Head of Public Affairs and Policy, Debra Morgan and Chris Boyle, UK Medical Affairs at Nordic Pharma