"The promotion of pathogen-reduced cryoprecipitate and cryoprecipitate by the WHO Essential Medicines List... is moving backwards, not forwards" Comment by WFH on the risk of harm to people with #hemophilia #Healthequity #Free to read with reg thelancet.com/journals/lanha…

Highly critical article in The Lancet Haematology commenting on the decision of the World Health Organisation (World Health Organization (WHO)), to recommend cryoprecipitate rather than FVIII concentrate in its Essential Medicines List as treatment of #hemophilia A. Let's hope they see sense and change their

Walk today on headland near Keadue beach, Donegal

The Scottish Medicines Consortium today approved FIX Gene Therapy Hemgenix for interim use utilising a patient access scheme (PAS). The list price is £2.6 million but I am sure that a discounted price would have been negotiated under the PAS

Normal enough wording. Subject to ongoing evaluation and ongoing assesment but it is approved for reimbursement

Afternoon stroll, Donegal

Always a pleasure to fly from Donegal airport. Parking directly outside terminal, good coffee friendly staff and great scenery. Donegal Tourism

Always a good day when you can get a new book by the amazingly talented Donal Ryan Dubray

Biomarin has announced that it will limit the supply of their FVIII Gene Therapy, Roctavian to the 3 countries where it is currently reimbursed-US, Germany and Italy. They will discontinue further manufacture at present as these countries can be supplied from current stock

Brian O Mahony We have already treated two patients who have a good expression and the third one is planned for September

Commemoration at grave of Michael Collins today at Glasnevin cemetary

📰On May 20, 2024, the UK's largest and longest public inquiry revealed systemic failures in handling #hemophilia treatments, leading to HIV and hepatitis C infections. The report calls for immediate compensation for victims. Read the full article ➡️ bit.ly/4cB3a5s

Productive discussions today IrishHaemophiliaSoc and pleased to welcome and host Haemophilia Society CEO Kate Burt and incoming Chairperson designate Conan McLiwarth

Excellent day with [email protected] picking the brains of Brian O Mahony at IrishHaemophiliaSoc headquarters in Dublin. The Irish hospitality is second to none. We at Haemophilia Society are looking forward to much more collaboration in the future. #bleedingdisorders

During our long and productive WFH Twinning programme with the Vietnam Haemophilia Association, I deleloped a taste for Pho. Sharing that enthusiasm with the IrishHaemophiliaSoc Staff team who all enjoyed their Pho dishes

Fantastic. Well done

The first in a series of 6 clinical webinars organised by IrishHaemophiliaSoc has just started. Niamh O'Connell giving an update on Haemophilia A and B WFH EHC_Haemophilia EAHAD Michael Makris . All those registered will recieve a summary E-Zine by e mail on friday

Progress in treatment now means that with access to optimal treatment, severe haemophilia is now moderate or mild with access to higher troughs. Niamh O'Connell IrishHaemophiliaSoc clinical webinar

Outcome measures in haemophilia are more challenging than expected, often due to survey fatigue Niamh O'Connell IrishHaemophiliaSoc Clinical Webinar

In Barcelona speaking Hemofilia.cat [ACH] Conference with Michael Makris . Always a pleasure to spend time with this wonderful group.