From Bettina Carty, HAE Ireland

HAE Ireland Patient Day 29th March 2025
On 29th March, 2025, HAE Ireland had its first official patient meeting – a highly successful event with patients traveling from all parts of the country to St. James’s Hospital in Dublin, who had kindly offered us their seminar room and support for the occasion.

The event started with Bettina Carty, national contact for HAEi, and Yujin Yamamoto, involved with HAE Japan, currently based in Ireland, providing fantastic support to HAE Ireland, welcoming the patients and speakers. Bettina discussed the importance of a group like HAE Ireland, the support and applications that are available through HAEi, traveling with the disease, and future events for HAE Ireland, including hae day :-) on 16th May. Yujin spoke on the availability of medications available to patients and newer treatments that have been developed.

Consultant Immunologist Professor Niall Conlon from St. James’s and Derval Reidy, Assistant Director of Nursing in St. James’s Clinical Research Facility, spoke on medications available in Ireland, legalities in getting new drugs for patients and modern drug trials, and how they work. They also discussed the importance of patient advocacy and how our voices can help us with these trials coming to Ireland, the availability of new treatments, and how they can help in the improvement of quality of life for HAE patients in Ireland.