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 …
We\’ve been uploading recordings from our ongoing series of webinars so you catch up on the ones you\’ve missed at your convenience So far we have uploaded; Dental Care: The New Normal with Alison Dougall and Laura Parkinson Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly Update on New Children’s Hospital with Eilish …
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 …
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, …
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 …
Von Willebrand\’s Disorder (VWD) Information Day 2020 Read More »
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. …
Reported death of children on non-Haemophilia Gene Therapy clinical trial Read More »
Haemophilia B (or Christmas disease) is a bleeding disorder whereby there is a deficiency of factor IX. With so many new developments in the pipeline, in relation to haemophilia B, we are pleased to inform you that we have organised an information webinar for people with haemophilia B. Topics will include an update on treatment …
The webinar for people with mild and moderate haemophilia planned for Saturday July 18 has unfortunately cancelled.
