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Bridging health and social care on #RareDiseaseDay

In the UK there are over 30,000 people with a rare genetic bleeding disorder such as haemophilia, Factor VII deficiency, Glanzmann’s or von Willbrand’s. Medical expertise and knowledge on rare diseases generally is scarce and scattered across borders. People often wait years for a diagnosis and struggle to access the

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Managing Treatment and Access to Products post Brexit

Many of our members have expressed concerns about how access to the treatments they require will be maintained following the UK’s departure from the EU. The Haemophilia Society has discussed the current situation and the mitigation plans in place with NHS England procurement managers, commissioners and clinician representatives. Specifically, we

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The Haemophilia Society urges Cabinet Office Minister David Lidington to boost funding to the Infected Blood Inquiry or risk failing the scandal’s victims

The Haemophilia Society urges Cabinet Office Minister David Lidington to boost funding to the Infected Blood Inquiry or risk failing the scandal’s victims. In a letter to Mr Lidington which we are publishing today, Clive Smith, Chair of Trustees of The Haemophilia Society, warns that the long-awaited Inquiry could be

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Family weekend at Barretstown camp up for grabs

Do you fancy a family weekend at Barretstown camp in County Kildare, Ireland? Barretstown is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses, and their families. There are limited spaces left in the following Spring family camps: Spring 5 (1-3 March) Spring 7 (22-24 March)

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