From 2015 -2018 The Haemophilia Society came together with a wide range of charities, clinical experts and patient representatives supported by the James Lind Alliance and The UK Haemophilia Doctors Organisation who are affected by both inherited or acute bleeding, whether due to the bleeding disorders our community experience, to
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THE HAEMOPHILIA SOCIETY’S RESPONSE TO TODAY’S CALL FOR FULL COMPENSATION FOR CONTAMINATED BLOOD VICTIMS
The Haemophilia Society today welcomes a call from the leaders of the main UK political parties in Westminster for full compensation to be paid to those infected and affected by the contaminated blood scandal without further delay. Political pressure has been growing on the Government to urgently address the financial
Contaminated blood support scheme: PM must act
Prime Minister Theresa May has been urged to intervene to improve the financial support system for people infected and affected by the contaminated blood scandal. The Government had promised to address campaigners’ concerns about inequalities in the Infected Blood Payment Scheme before the Infected Blood Inquiry began its witness hearings
Response to concerns about Emicuzumab
Recently reports have been shared on social media about deaths relating to a new treatment for haemophilia A, Emicuzumab (Hemlibra). This has been used in the UK for treatment of people with Haemophilia A and inhibitors since the start of last year. Earlier this year its license was extended to cover prophylaxis for people
The Haemophilia Society’s response to the Government’s announcement on changes to the contaminated blood support schemes
The Government’s announcement that an extra £30m is to be allocated to contaminated blood support schemes is to be welcomed, but it is not yet clear if it measures up to the demands of The Haemophilia Society and other campaign groups. The Society and 11 other campaigners, plus peers and MPs
Call for contaminated blood action
The APPG on Haemophilia and Contaminated Blood has written the Prime Minister to ensure that the Government sticks to its commitment to deal with problems with the contaminated blood support schemes before the infected blood inquiry begins. With the inquiry beginning its hearings tomorrow on the 30 April this deadline
A tribute to our community
Today, on the eve of the Inquiry’s first witness hearings, our thoughts are with all those members of our community who are preparing to relive painful and traumatic periods of their past to ensure that the suffering caused by the contaminated blood scandal is finally heard. We pay tribute to
Share your views with NHS England
NHS England is considering making available a new treatment, Emicizumab (Hemlibra), as an alternative to prophylaxis for people with severe haemophilia A without inhibitors. They now want your views. You can see the proposed commissioning policy and provide your input here https://www.engage.england.nhs.uk/consultation/severe-congenital-haemophilia-a/ The Haemophilia Society have been closely involved in
APPG Inquiry into Access to Treatment – Call for Evidence
The All-Party Parliamentary Group on Haemophilia and Contaminated Blood has launched an Inquiry into the current systems of licensing, procurement, commissioning and prescription of treatments for genetic bleeding disorders in the UK. It will document the current processes with a focus on how these processes impact on the treatments that
Spring issue of E-HQ is out now!
In this issue, you can read all about the success of our Big Red London Bridge Walk, we hear about all of the great events our programmes team have run recently, we give you an update on the Public Inquiry and, as always we show you all the great ways