Haemophilia

Image of biomarin press release

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 …

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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 …

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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 …

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