News from Sub Sahara Africa

From Regional Patient Advocate Patricia Karani

Collaboration with doctors across the region remains a cornerstone of my work. In the region, there is a network of HAE physicians, including Dr Sangassanga from Mozambique, Dr Innocent Kashongwe from DR Congo, Dr Ntyo’o Arnaund from Cameroon, Dr Suad Kamara from Sierra Leone, and Dr Pap Samba Agne from Senegal. I have encouraged them to engage with other specialists to motivate them to take an interest in managing HAE cases — both in countries with established MOs and in those where HAE patient advocacy groups are emerging.

The physician network addresses cases of unexplained angioedema that do not respond to allergy treatments and works toward accurate diagnoses. Encouragingly, I’ve worked with several physicians to include HAE as a topic in their talks when they speak at national meetings. I’ve recently supported Dr Hamidou Tahirou from Niger and Dr Innocent Kashongwe from DR Congo with requests.

Because HAE can affect patients with other conditions such as diabetes or cancer, I’ve reached out to doctors from various medical specialties. These collaborations aim to help physicians understand how to safely manage HAE in patients receiving other treatments — an important step given the potential for drug interactions and the general lack of HAE awareness in the medical community.

Several doctors from our network attended the 2025 HAEi Regional Conference EMEA, where they gained new insights, interacted with HAE patients and caregivers, and shared experiences with other healthcare professionals and pharmaceutical partners. The response has been overwhelmingly positive, with many doctors expressing a renewed commitment to improving care for their HAE patients.

One of our most impactful ongoing initiatives is helping suspected HAE patients connect with the right specialists. In countries without HAE experts, we facilitate referrals to ACARE Centres in South Africa (Prof Jonny Peter) and Kenya (Dr Priya Bowry) for accurate diagnosis and subsequent management in their home countries. This effort not only benefits patients but also enhances local doctors’ understanding of HAE, contributing to stronger regional expertise and ultimately improving patient outcomes.