Month: July 2020

Our Summer Mag is out now!

The latest issue comes packed with loads of interesting articles from members and staff, news and updates, reports from events and more. In his CEO Report, Brian provides an update on Twinning, Gene Therapy and reports on the WFH Virtual Congress and outlines plans for re-opening the office. Speaking of virtual events, Nina reports from …

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Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review :: 2020 – Issue 1

The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date. The Society has adapted a publication compiled by the European Haemophilia Consortium to produce a comprehensive update on ‘Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review’. It is designed to be informative for …

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Upcoming Webinars in July

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on; Wednesday July 8 @ 2pm: Treatment choice in an era of change: Decision process on choosing a new product with David Page, Canadian Hemophilia Society. Saturday July 18: The Haemophilia B Webinar & Mild/Moderate Haemophilia Webinar organised for Saturday, …

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Von Willebrand\’s Disorder (VWD) Information Day 2020

The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disorder (VWD) will now take place on Saturday, August 29 in the Castleknock Hotel, Dublin. This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to …

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Reported death of children on non-Haemophilia Gene Therapy clinical trial

In recent days, we have been made aware of the death of 2 children who were being treated as part of a clinical trial for Gene Therapy for a very serious childhood condition called X- linked myotubular myopathy (XLMTM). This clinical trial was using an adeno associated viral vector (AAV) to deliver the Gene Therapy. …

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