Members, our first regional visit of the year is taking place the 13th and 14th of February in Cork. We will be meeting at the Kingsley Hotel in Cork from 6-8pm on the 13th, where there will be refreshments and the opportunity to discuss any issues you might be having. If a member cannot attend …
Read about the highlights of the October Members’ Conference 2022.
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 …
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 …
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 »
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 …
New Video Focuses on Transition to Adult Health Services Read More »
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 …
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.
