If you have von Willebrand disease, we would like your views on a new synthetic treatment which could finally get approved this month. The first recombinant treatment for VWD, Vonicog Alfa, was rejected by NHS England earlier this year, but will be reviewed again at the end of this month.
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UPDATE FROM BOARD OF TRUSTEES CHAIR, CLIVE SMITH
19 June 2020 – Here is an update from our Chair, Clive Smith. This week he talks about the amazing WFH Virtual Summit that has been happening, and also gives details of our own Member Conference this November. He also talks about our brilliant team, many of whom people never
Watch the EHC webinars on women and bleeding disorders
The video recordings of the webinars on women and bleeding disorders held on 28 and 29 May 2020 are now available on the The European Haemophilia Consortium (EHC) YouTube Channel. * To watch the webinar on the management of heavy menstrual bleeding, click here* To watch the webinar on the
Update from Board of Trustees Chair, Clive Smith
5 June 2020 – Here is an update from our Chair, Clive Smith. This week Clive talks about our valuable volunteers, the Peer Review report on centres and the virtual event linked to this, new factsheets about Hemlibra and shares details about the launch of the WFH Virtual Summit: Connecting
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
Update from Board of Trustees Chair, Clive Smith
29 May 2020 – Here is an update from our Chair, Clive Smith. This week Clive talks about our new rare diseases factsheets now available to download from our website, he gives an overview of recent board meetings and shares details about a range of virtual webinars and conferences being
Update from Board of Trustees Chair, Clive Smith
22 May 2020 – Here is an update from our Chair, Clive Smith. This week Clive talks about plans for our 70th Birthday and how you can get involved with our 7.0 Challenge, how we can come together as a community virtually and keeping in touch with your centre. If there’s
Update from Board of Trustees Chair, Clive Smith
15 May 2020 – Here is an update from our Chair, Clive Smith. This week Clive talks about plans for our 70th Birthday and 7.0 Challenge, Knitting for Uganda and ‘The Haemophilia Society matters to us because…’ project. If there’s anything you particularly want to know more about, or something we
Sponsored Knit for Uganda
Four years ago Dr Kate Khair went to visit a family in a remote rural part of Uganda. They had a daughter and four sons with a severe haemophilia and their mum was pregnant with another child. They lived six hours drive from the next big town in a ‘village’
HBDCA launch new website
The Haemophilia & Bleeding Disorder Counselling Association (HBDCA) have recently launched their new website and are there for any support they can give to the community, especially during these challenging times of COVID19. www.hbdca.org.uk