News

New research reveals that more than half of people have experienced an unusual bleeding symptom

New research reveals that more than half of people have experienced an unusual bleeding symptom, as campaign launches to improve diagnosis Finding Von Willebrand shares the experiences of people living with von Willebrand’s disorder to raise awareness of the condition and support diagnoses in Ireland Dublin, 28th November 2022: Finding von Willebrand, a new campaign …

New research reveals that more than half of people have experienced an unusual bleeding symptom Read More »

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 …

First Haemophilia Gene Therapy Licensed by EMA Read More »

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 …

update for people with bleeding disorders attending the NCC Read More »

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 …

Ireland seen as gold standard in Haemophilia Care, 20 years on from publication of Lindsay Tribunal Report Read More »