From Bettina Carty, HAE Ireland
It has been a quick year, and my first one as the national contact in Ireland. Our group is small but growing all the time, and with the help of immunology teams letting their patients know we are here, hopefully, that number will grow.
I had the pleasure of attending the 2023 HAEi Regional Conference EMEA in Munich in September, and it was fantastic to meet so many people and gain new information. The advancement in treatment has been so good in the last few years due to the hard work of the professors/doctors and drug companies that attended. So many of us now live the “normal” lives we wished for.
During 2023, I also had the opportunity to discuss HAE as a patient to the global staff of one of the larger pharmaceutical companies – the feedback was great, and many of the attendees said the fact they could see and hear the patients they create these drugs for was so helpful. This is being followed in 2024 by an information campaign to inform the public of the number of patients with Rare Diseases, and I will be representing the HAE patients – it is great to see these companies seeing and listening to a patient’s perspective.
As we enter 2024, I am hoping to continue advocating for HAE patients and carers in Ireland and also to increase my social media platform to help make people aware of our disease.
“Great oaks from little acorns grow”
