The Infected Blood Inquiry The Inquiry will examine why men, women and children in the UK were given infected blood and/or infected blood products; the impact on their families; how the authorities (including government) responded; the nature of any support provided following infection; questions of consent; and whether there was a cover-up. Preliminary Hearings BBC News at Ten : […]
Read moreHAEMOPHILIA NEWS The purpose of this page is to provide news articles related to Haemophilia. The information contained on this page includes various items, for example: Developments of new clotting products, vaccination updates and haemophilia industry business along with other areas of this specialist field of medicine. Click on each link to read the News article: August Spark Therapeutics […]
Read moreContaminated Blood Scandal Updates & Media Panorama – Contaminated Blood: The Search for the Truth Published on 11 May 2017 It has been called the worst treatment disaster in the history of the NHS. More than 2,000 people died and thousands more were infected with HIV and Hepatitis C after being treated with contaminated blood products. All the victims […]
Read moreReview of haemarthropathy cases During a meeting at the Department for Work & Pensions yesterday, 18th June 2018, we discussed the information note below which provides details on the haemarthropathy administrative exercise due to start on Monday 25th June. Statement from Sarah Newton MP Following a meeting between my predecessor, Penny Mordaunt MP and the co-chair of the […]
Read moreSporadic CJD cases in the UK bleeding disorders community reported The sporadic form of the disease, also known as sporadic Creutzfeldt-Jakob disease (CJD), or classical CJD, accounts for approximately 80% of all recognised prion disease. Sporadic CJD occurs in every country with a remarkably similar incidence: approximately one person in every million develops sporadic CJD per year. Sporadic prion disease The sporadic form of the disease, […]
Read moreKuala Lumpur to host World Federation of Hemophilia Congress in 2020 The WFH World Congress is said to be the most significant international forum that brings together the entire global bleeding disorders community. The congress will see a line-up of speakers comprising leading experts in the field of inherited bleeding disorders and healthcare officials. The Congress will showcase the latest […]
Read moreThe European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe. The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and […]
Read moreOn the eve of meeting with Sir Brian Langstaff, chair of the public inquiry into the contaminated blood scandal, I am proud to share my interview with Gretchen Hammond. A LONE VOICE FOR LGBTQ HEMOPHILIACS IGNORED BY ADVOCACY ORGANIZATIONS, LGBTQ HEMOPHILIACS HAVE AT LEAST ONE RESOURCE Mark Ward, Founder of Haemosexual & Haemosexual Australia Even as the LGBTQ community grows […]
Read moreRoche shares drop after deaths of patients taking Hemlibra ZURICH (Reuters) – Swiss drugmaker Roche’s shares dropped on Wednesday after it told U.S.-based haemophilia advocacy groups that five patients treated with its medicine Hemlibra had died, while maintaining that the therapy was not the cause of the deaths. The shares slipped 2 percent by 0850 GMT — double the […]
Read moreThe European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe. The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other […]
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