Late last week, we were informed of an international recall of all Ferring Parmaceuticals Limited nasal sprays containing desmopressin, including Octim®, Octostim®, Desmospray®, DDAVP Spray®. This spray is typically used in people with Von Willebrand Disease types 1 and 2 (except 2B) and mild haemophilia. It is also used for women with heavy menstrual
TREATMENT
Home delivery – tell us about it
If you get your medication through home delivery, we would like to hear from you. The Haemophilia Society is gathering feedback – good and bad – about home delivery of medication to find out if there are any areas that need improvement or examples of good practice that should be
New Framework for products for Haemophilia A
A new framework for buying medicines to manage Haemophilia A came into force across the UK on 1 July. This will run initially for 24 months. This framework differs to those in the past as it has been divided into 4 categories reflecting the different sort of products available, these
Peer Review report on centres published today
Today sees the publication of the Overview Report of the Inherited and Acquired Haemophilia and other Bleeding Disorder Peer Review Programme. The aim of the programme was to examine the care provided in haemophilia centres across the UK and measure them against the Quality Standards developed by the UK Haemophilia
VWD Guidelines public comment period now open
The WFH invites the global VWD community to comment on the VWD guidelines and recommendations. This is being done through an online survey where stakeholders from the community can choose to respond to the questions/recommendations. The comments can be made on all the recommendations or only on some of them.
Hemlibra availability with Corona Virus
Following concerns from our community, Roche have issued the following statement about supply and availability of Hemlibra: We understand the interest in Hemlibra▼(emicizumab) for people with haemophilia A and are committed to ensuring adequate supply amid the queries around how the coronavirus might impact availability of Hemlibra. To date, Hemlibra has
NHS England decisions on new treatments for bleeding disorders
The first artificially made treatment for people with severe types of von Willebrand disease (VWD) has been refused funding by NHS England. This means that people with VWD who need factor cover during surgery or for bleeding complications must continue to rely on plasma-based treatment. Last month, NHS England’s Clinical
Call for feedback from patients with von Willebrand Disease
NHS England is considering evidence which could lead to the commissioning of a new treatment for adults with Von Willebrand Disease. NHS England believes it has seen enough research from NICE (the National Institute for Health and Care Excellence) to consider making vonicog alpha routinely available and is now looking
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
Announcement from NHSE on Inhibitor Treatment
NHSE has announced that Emicizumab (marketed as Hemlibra) can be provided to Haemophilia A patients with current inhibitors under the Framework Agreement for the supply of products for the treatment of bleeding disorders as an in year service development. From 1st July it will be available for routine prophylaxis to Haemophilia
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