HAEi representatives were recently in Kenya to advocate for people with HAE, during the Biennial African Society for Immunodeficiencies (ASID) and Allergy Society of Kenya (ASOK) Congress.

Africa is an important focus for HAEi, as there are too few diagnosed cases of HAE, and knowledge of the condition amongst healthcare professionals is low. As a result, when Patricia Karani, the Regional Patient Advocate (RPA) for Sub Sahara Africa, and Maria Ferron, RPA for Mediterranean, North Africa, Benelux, and British Isles, had the opportunity to be part of the Congress, the invitation was gratefully accepted.

The Congress, held from 25-27 June 2025 in the Kenyan capital, Nairobi, was attended by healthcare professionals from across Africa. The focus was on patient care in the era of personalized medicine, a theme perfectly suited to the aims of HAEi.

At a special symposium, supported by HAEi, Dr Priya Bowry, a Kenyan allergist and a specialist in HAE, presented on the condition in the context of African countries. She explored the clinical realities of HAE, including data on the disease across the continent. Dr Bowry then invited Patricia and Maria on stage, so the assembled healthcare professionals could hear first-hand about their life with HAE, and the advocacy work of HAEi.

Maria commented: “During our presentation, we shared with the public our journey to diagnosis, pointing out the differences between countries; how it is to live with HAE in Africa, where the situation in recent years has improved considerably in some North African countries, and the current picture regarding access to modern treatment.”

Patricia said: “Our presentation aimed to raise awareness of HAE among African healthcare professionals, explain our roles as patient advocates, and the work of HAEi. I think that the positive impact on HAE in Africa will be felt in the future.”

With rates of diagnosis of HAE low in African countries, there is an urgent need to address healthcare professionals’ awareness and understanding. HAEi is always on the lookout for opportunities to engage and raise the focus of HAE. Michal Rutkowski, Director, Regional Advocacy Program, commented: “We know that healthcare professionals across Africa want to hear the patient voice. Maria and Patricia were able to discuss their own experiences as patients, as well as advocate for everyone with HAE. This combination of personal experience and professional advocacy is a powerful way to raise awareness and increase diagnosis and treatment.”

There are HAEi Member Organizations (MOs) in many African countries. You can find out more and search for your local MO here. Additionally, Dr Priya Bowry runs 1 of the 2 ACARE-accredited HAE clinics in Africa. You can find out more about ACARE and search for centres here.