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EHC Statement on Desmopressin Nasal Sprays availability

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

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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

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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

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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

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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. 

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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

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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

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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 The Haemophilia Society have been closely involved in

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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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