Month: June 2019

June 15, 2019
Recombinant factor VIII products are NOT the same

Three European observational studies – from PedNet, FranceCoag Network and UKHCDO – have suggested that second generation recombinant factor VIII products are associated with a high risk of inhibitor development than third-generation alternatives in previously untreated patients with severe haemophilia A. There was some overlap in the patients included in these studies so a new …

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June 14, 2019
European Haemophilia Consortium releases movie about women and bleeding disorders

The European Haemophilia Consortium (EHC) has released a new film to raise awareness about the experiences of women with a bleeding disorder. Directed by Goran Kapetanović, the 43-minute movie features personal accounts from women living with a bleeding disorder who describe the impact of their condition on childhood, relationships, daily life and their decisions about …

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June 12, 2019
Medical decision-making in the UK and US

Doctors’ decisions about treatment for haemophilia are made differently depending which side of the Atlantic they practice, a study shows (Haemophilia 2019 May 5. doi: 10.1111/hae.13766). The qualitative analysis of the factors that determined haematologists’ treatment choices included 24 clinicians with 23 – 28 years’ experience. US physicians were more inclined to support patients’ choice …

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June 10, 2019
Pregnancy and Delivery in Women with von Willebrand Disease

A new review describes the medical management of pregnancy and delivery in women with von Willebrand disease as ‘a significant clinical challenge’ (Eur J Haematol 2019 May 20. doi: 10.1111/ejh.13250). Covering the importance of diagnosing subtypes before conception, planning treatment, complications and variability in factor levels, the authors discuss management in women whose bleeding risk …

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June 7, 2019
Initiative Raises Women’s Profile in the US

The Hemophilia Foundation of Michigan (HFM) is working hard to promote awareness about women with haemophilia, according to a feature in Haemophilia News Today (May 29th2019). The interview with Susan Lerch, HFM Executive Director, followed the success of a new national conference, Being Visible, held in November 2018 and attended by 103 women from throughout …

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June 5, 2019
WFH Strikes Up New Alliances

The World Federation of Hemophilia (WFH) and Bayer have agreed a five-year alliance to deliver training and education to healthcare professionals and treatment in more than 60 underserved countries. The initiative is part of the WFH Humanitarian Aid Programme. As a new lead sponsor, Bayer will donate 50 million IU of octocog alfa (Kogenate), its …

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June 4, 2019
Talking To Patients About Gene Therapy

Excitement about the potential of gene therapy has permeated the lay media as much as the scientific and professional press and it’s not unusual for patients to ask about it. Advice on how best to navigate the promises and pitfalls is now available, with perspectives from a patient advocate with personal experience of haemophilia and …

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June 3, 2019
Market analysts cheerful about haemophilia

The global haemophilia market is growing at over 6% annually and is expected to be worth $16 billion by 2023, according to market analysts Market Research Future.  Its report suggests that increasing prevalence – presumably meaning higher diagnosis rates – and awareness will drive expansion of the treatment market. Gene therapy has enormous potential but …

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June 1, 2019
Impact of EHL factor VIII on quality of life

There is a hope, or perhaps expectation, that extended half-life factors will improve management for many people with haemophilia. Data from clinical trials show that many people are able to reduce dose frequency to some extent, particularly those with haemophilia B. A new analysis of the Phase III Pathfinder studies now describes the impact on …

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