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
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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
Advocating for Access to New Treatment
This is an exciting time as new treatments and new treatment approaches for bleeding disorders are constantly being developed. However, not all of these new advances are getting approved for use in the UK. In this article we have used our work in seeking to get access to BPL’s Coagadex
Supporter story – Jane Fisher is taking her family on a 10 mile walk for The Haemophila Society
We are gearing up for our Big Red London Bridge Walk this Spring! The route takes you across eight bridges, across ten miles. We will weave through the London sights and raise money and awareness of genetic bleeding disorders along the way! Jane Fisher, one of fantastic walkers explains why
BRIDGING HEALTH AND SOCIAL CARE ON #RAREDISEASEDAY
In the UK there are over 30,000 people with a rare genetic bleeding disorder such as haemophilia, Factor VII deficiency, Glanzmann’s or von Willebrand’s. Medical expertise and knowledge on rare diseases generally is scarce and scattered across borders. People often wait years for a diagnosis and struggle to access the
Managing Treatment and Access to Products post Brexit
Many of our members have expressed concerns about how access to the treatments they require will be maintained following the UK’s departure from the EU. The Haemophilia Society has discussed the current situation and the mitigation plans in place with NHS England procurement managers, commissioners and clinician representatives. Specifically, we
The Haemophilia Society appoint new legal representation
The Haemophilia Society has ended its association with Malcomson Law UK Ltd, meaning the firm will no longer represent The Society at the Infected Blood Inquiry. We have appointed Eversheds Sutherland as our new legal representative. This is a UK-wide firm with branches in England, Scotland, Wales and deep knowledge
Supporter story – Father is inspired to run the London Marathon after his son is diagnosed with haemophilia A
Hello I am Sam and this is our story about our youngest son Jaxon and his recent diagnosis of moderate Haemophilia A. I have been given a place in the 2019 London marathon running on behalf of the fantastic Haemophilia Society. My youngest son Jaxon was diagnosed with haemophilia which
Thousands of documents submitted to Infected Blood Inquiry
The Haemophilia Society has submitted approximately 30,000 scanned documents to the Infected Blood Inquiry, in compliance with its request for archive evidence. The Inquiry team yesterday confirmed The Society has provided all the documentation that has been requested. It will now be reviewed by the Inquiry team and assessed for