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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The Haemophilia Society welcomes NHSE announcement on Hemlibra
The Haemophilia Society welcomes NHS England’s announcement today that they will now fund a new treatment for patients with severe Haemophilia A called Hemlibra (emicizumab). Prior to this, Hemlibra was only available to patients with inhibitors, but the new funding announced today means that more people will have access to
Daily Mail article helps to raise awareness of women with bleeding disorders
There is a lot of misunderstanding about bleeding disorders and many people don’t know that women are affected too. In fact, tens of thousands of women across the UK are living with the symptoms of a bleeding disorder without even knowing it. Our Talking Red awareness campaign was launched to
Letter from the APPG to Amber Rudd
Letter signed by members of the Haemophilia and Contaminated Blood APPG to Amber Rudd, Secretary for Work and Pensions, calling for a meeting to voice the needs of members of the affected community. Yo can read the letter in in full here
Letter to Bill Wright and campaigners regarding payment schemes
Below is an update from the outgoing Prime Minister on the progress of discussions between the Devolved Administrations to consider how to improve parity of financial support for infected and affected people across the UK. You can read one of the last letters Theresa May sent as Prime Minister in
HQ Summer issue out now!
HQ is our members magazine, which you will receive in hard copy twice a year when you join the Society. In this issue, you can read all about the inspiring and successful fundraising our supporters have achieved, we find out all about our new youth ambassadors, have updates from our
APPG holds evidence sessions in Parliament
Over the course of the last six weeks, the All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood has held a series of evidence sessions in Parliament on Access to Treatment for people with bleeding disorders. Parliamentarians including Sir Peter Bottomley MP, Diana Johnson MP, Liz McInnes MP and Baroness
BBC2 documentary on vCJD
Following last night’s BBC2 documentary on vCJD – Mad Cow Disease: The Great British Beef Scandal – we are seeking advice on what this means for our community, and we will share any information with you as soon as possible. The documentary aired on BBC2 last night at 9pm. You
Getting information from UKHCDO – an update
The United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) has produced an explanatory document about patient information recorded on the National Haemophilia Database (NHD). It also provides a history of the NHD and its development, provides clarity on the information held and any limitations where appropriate. The explanatory document is now
New resource – Dental Care For Adults With A Bleeding Disorder is launched
We are pleased to announce that our new resource, Dental Care For Adults With A Bleeding Disorder, is now available for you to download or order. This is the first resource we have produced that provides information about looking after your teeth, mouth and gums along with dental care and