Our 2024 Patient Day in York was a great success; we had patients, healthcare professionals, and speakers all come together to share valuable information and experiences. Patients had the opportunity to learn more about their condition, treatments, and how to manage their health better; healthcare professionals could provide expert advice and support to patients, while our PhD student shared her research project with us all.

There was time for meeting and talking to others, which attendees always say is one of the best parts of the day. Many enjoyed catching up with old friends, while others took the opportunity to strike up new conversations with those they hadn’t met before.

During our lunch break, we walked along the river while wearing our HAE UK-branded t-shirts. The sun was shining, and the weather was perfect for a stroll. This walk was also an important opportunity to raise awareness about HAE. As we walked, we talked about our experiences and the challenges faced by people with HAE.

Overall, the event was a fantastic opportunity for everyone involved to come together, learn from each other, and share experiences.

2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024

Six representatives from HAE UK, along with some UK doctors, recently participated in the 2024 Global Leadership Workshop for patient organization leaders and the ACARE Global Angioedema Forum 2024 for angioedema experts in Copenhagen, Denmark. During the workshop and forum, attendees could share their knowledge and experiences and learn from experts in the field. The event provided a valuable platform for networking and interaction with other HAEi member organizations, ultimately helping to further support and advocate for individuals affected by HAE. We are excited to start implementing some of the things we learned to support our UK patients and their families further.

Clinical trials

Several UK patients with HAE are currently participating in various clinical trials, and the results are incredibly promising. These trials are showing significant improvements in the management and treatment of HAE, giving hope to patients who have long struggled with this rare and potentially life-threatening condition.