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
EHC Statement on Desmopressin Nasal Sprays availability
COVID-19 TESTING RESEARCH STUDY
If you have received this letter in the post and you have a bleeding disorder you will NOT be able to take part in this research study. The Haemophilia Society called the FREEPHONE number on the letter to query why and was informed that “its for safety reasons as this
In memory of Jane Tibbutt
Jane Tibbutt, who died, aged 80, in May 2020, lived with a bleeding disorder and, as a nurse and mother, cared for many others with haemophilia. Inspired by her warm personality, her family and friends have donated more than £2,000 to The Haemophilia Society in Jane’s memory to help us
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
We’ve got £7,000 reasons why we need your support today
We’ve got £7,000 reasons why we need your support today. To mark our 70th birthday this year we want to raise £7,000 through our Birthday Appeal. That’s money which will help us be there for every person with a genetic bleeding disorder, to support them in leading a fulfilled life,
UPDATE FROM BOARD OF TRUSTEES CHAIR, CLIVE SMITH
3 July 2020 – Here is an update from our Chair, Clive Smith. This week he talks about the forthcoming new video series Bleeding Matters Live and a discussion about the contaminated blood scandal, with guests from Canada and Ireland. He also updates us on the task of hiring a
Haemophilia centre experience during lockdown
Want the chance to win a £100 worth of Amazon vouchers? Please take part in our quick survey and you could be one of five lucky winners! We want to know about your experience of services from your haemophilia centre over lockdown so we can better understand the things that
Second chance for recombinant VWD factor
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.
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