The haemophilia team at Bristol have designed a short questionnaire (with input from some local patients) which aims to find out how people with bleeding disorders are managing the COVID-19 vaccination. Some patients registered at their centre have expressed concern and anxiety with regards to the potential risks of bleeding
Take part in survey about your experiences of the COVID-19 vaccine
New guidelines for diagnosis and management of von Willebrand Disease published
Von Willebrand Disease (VWD) is the most common hereditary bleeding disorder and there is a need to improve care and treatment for VWD. Many patients remain undiagnosed until they experience a severe bleeding episode that could have otherwise been prevented. Therefore, easier and simple tools for diagnosis are needed. The
Jamie’s Global Racetrack Walk
Jamie who suffers from severe haemophilia B is walking almost 95 miles, an equivalent of a distance of 31 famous race tracks from across the world, to raise funds for The Haemophilia Society this month. We recently got in touch with Jamie to ask how he was getting on; “The Challenge
Sign up to our 36 challenge today!
More than 36,000 men, women and children in the UK have a diagnosed bleeding disorder, and the number rises every year. To mark this number and raise both awareness of rare bleeding disorders and funds to help us ensure every person living with a bleeding disorder is supported, we have
Talented mum raises funds for The Haemophilia Society
My second-born son Bobby was born in May 2019, after a short stay in hospital due to other unrelated complications the ‘standard baby heel pricks’ on Bobby’s feet continued to bleed for days & days and at 4 days old he was finally diagnosed with severe Haemophilia Type A. So that
Your questions about the COVID-19 vaccine and bleeding disorders
Following the official Government guidance giving the COVID-19 vaccine and to people with bleeding disorders some of our members have been in touch with their questions. Here you will find answers to the most frequently asked questions we have received: COVID-19 frequently-asked-questions/ We will update this page as we get
Understanding the preferences of people with haemophilia for gene therapy
You are invited to take part in a study which aims to explore the preferences of people with haemophilia for gene therapy and other haemophilia treatments. This research will assess how adults with either moderate or severe haemophilia (haemophilia A or haemophilia B) in the United Kingdom value different features
Change to presentation shown at our Annual Member Conference
We recently received a query with regard to some of the information presented at our Annual Member Conference on Saturday 14 November. In response to that query, an amendment has been made to the presentation by Charles Percy on Extended Half-Life Products and the information regarding PEGylated Factors products and
Take Part in the Newly Launched National Bleeding Disorders Patient Experience Survey
We are proud to launch the Bleeding Disorders Patient Experience Survey, developed in partnership with a pharmaceutical company. We invite everyone living with or caring for someone with a bleeding disorder to take part. We have developed this nationwide survey to help us gain a true understanding of the patient
Joint statement from The Haemophilia Society and Healthcare at Home
Constructive discussions held between Healthcare at Home and The Haemophilia Society Senior representatives from The Haemophilia Society and Healthcare at Home met virtually on Friday 20 November. This meeting gave The Haemophilia Society an opportunity to discuss and reinforce the points identified in their recent communication sent to Darryn Gibson,