Haemophilia 180 – Taking control A better future for younger people with haemophilia The Haemophilia Society recently worked with Roche and Chugai to produce a report looking at the issues faced by young people when they begin to take control of their own treatment. The report welcomes the advances in
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Public Inquiry Update
Eleven months after the Government announcement of the Statutory Public Inquiry into the Contaminated Blood Scandal, The Haemophilia Society has, today, reaffirmed its demand that, at the minimum, the Terms of Reference and a timetable for the inquiry must be published before the first anniversary of the announcement on July
We need your help to find out what matters most
No one understands bleeding disorders better than those who experience it or care for those that do every day. The Stop the Bleeding survey that took place in 2017, was developed to better understand what matters to parents, carers and clinicians in the field of bleeding disorders. Using your responses,
Take part in our inhibitor survey
We’re conducting a survey among people aged 16+ with a bleeding disorder who have an inhibitor and their family members. An inhibitor is a type of antibody that prevents factor replacement treatment from working. When an inhibitor develops, it binds to factor concentrates such as factor VIII or factor IX,
Response to the Terms of Reference for the Inquiry Consultation
Today is the final day for submissions to the consultation on the terms of reference for the statutory public inquiry into contaminated blood and blood products. The Haemophilia Society was keen to contribute in a constructive, effective and proactive manner to this consultation and ensure the views of our members were
World Haemophilia Day 2018
Welcome to World Haemophilia Day Today is World Haemophilia Day. It is a day where we hold events to promote understanding and awareness of bleeding disorders. We do this while raising much needed funds for The Haemophilia Society to support our campaigning, events and services. This year’s theme This year,
APPG Meeting on the 31st January 2018
On the 31st January 2018 the APPG met to discuss the Contaminated Blood Inquiry and support schemes for those affected by the Scandal. You can read the minutes of the January 2018 APPG meeting here
Research into the lives of Haemophilia Siblings
Calling all brothers and sisters of people with severe haemophilia A! One of our members recently contacted us about a very interesting study exploring the lives of healthy siblings of adults living with severe haemophilia A. We thought you might be interested in taking part. This is what Cathy the
The Haemophilia Society contributes to Health Select Committee Brexit report
The Health and Social Care Committee in the House of Commons today published its latest report on the impact of Brexit on medicines, medical devices and substances of human origin. We are pleased that it raises issues that we agree need to be considered by the Government to ensure the
Meeting with the chair of the Contaminated Blood Inquiry
This week we met with Sir Brian Langstaff and some of his newly appointed Inquiry team to discuss the Terms of Reference for the forthcoming Statutory Public Inquiry into the contaminated blood scandal. Sir Brian and his team were very welcoming and he made it very clear he was there