October Members’ Conference 2022 Highlights
Read about the highlights of the October Members’ Conference 2022.
Haemophilia
First Haemophilia Gene Therapy Licensed by EMA
First Haemophilia Gene Therapy licensed by European Medicines Agency On Wednesday of this week, August 24th, it was announced that the European Medicines Agency ( EMA) have granted a conditional marketing authorisation to the company Biomarin for their FVIII Gene Therapy Valoctocogene Roxaparvovec (brand name: Roctavian). A conditional marketing authorisation (CMA) recognises that the medicine …
Ageing Conference 2022
Dates: 2nd to 4th September 2022 Venue: Hodson Bay Hotel, Athlone, Co. Westmeath. We are now living in a time where the first generation of people with haemophilia will have to confront the challenges of ageing. Many people with haemophilia can expect to live beyond their 70th or even 80th year. This is very reassuring …
update for people with bleeding disorders attending the NCC
We have received an update for members with bleeding disorders attending the NCC, please see below: The global COVID19 pandemic is ongoing and we would like to thank you for your continued support and patience. Although overall case numbers and numbers of people needing hospitalisation have improved in comparison to earlier waves, there is a …
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New Video Focuses on Transition to Adult Health Services
Brilliant New Video Shines a Light on Transition from a paediatric (children’s) hospital to an adult hospital. Sunday, 17 April marked World Haemophilia Day 2022. This year, the National Coagulation Centre (NCC) at St James’s Hospital and Children’s Health Ireland (CHI) are shining a light on the journey experienced by young people when they transfer …
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Ireland seen as gold standard in Haemophilia Care, 20 years on from publication of Lindsay Tribunal Report
20 years on from the publication of the Lindsay Tribunal Report, procurement of Haemophilia medications in Ireland overseen by the Haemophilia Product Selection and Monitoring Advisory Board (HPSMAB) is now seen as the most effective model globally in haemophilia care. The success of the HPSMAB and National Haemophilia Council (NHC) is being highlighted by the …
Newly Diagnosed Information Day
In conjunction with CHI at Crumlin, the I.H.S. is delighted to announce a Newly Diagnosed Info Day in Castleknock Hotel on Saturday, July 16.
Webinar and Q&A Sessions
While the developing Covid-19 situation has scuppered our ability to organise events for the time being we have decided to do something a little different and host a series of online Webinars and Q&A Sessions in the coming weeks. As April 17th is World Haemophilia Day, we will host two Webinars next week on the …