News from Sub Sahara Africa

From Regional Patient Advocate Patricia Karani

Since the start of 2026, my work in the Sub Sahara Africa region has focused on making vital connections between doctors, as well as between doctors and patients, implementing education and awareness activities, and supporting cross-border HAE initiatives.

In Cameroon, Dr Arnaud Ntyo’o, developed a survey to evaluate competencies across diagnosis, treatment, and long-term management of HAE. We worked together to refine and tailor the questions for Cameroon before dissemination. In response to needs highlighted by the survey, I created a WhatsApp group to facilitate peer-to-peer knowledge exchange. In addition, Dr Priya Bowry from the Nairobi (Kenya) ACARE center, and I are developing training to further address the gaps identified.

Working closely with Dr Priya Bowry, healthcare professionals in Mozambique received HAE training customized to their needs. The online training covered scientific and patient-centered perspectives and has so far been delivered to eight participants. Based on my guidance for content topics, Dr Priya presented clinical cases that emphasized diagnostic accuracy, evidence-based treatment pathways, and comprehensive disease management. I presented the patient perspective, providing the lived experience of delayed diagnosis and barriers to care, and introduced HAEi, highlighting the role HAEi resources can play in supporting clinicians and their patients.

In Kenya, a recent educational meeting at Naivasha County Hospital convened more than 60 healthcare professionals and had a dedicated session on strengthening diagnostic precision for angioedema, including HAE. I shared my patient experience to reinforce the systemic challenges of delayed diagnosis and to emphasize the importance of early recognition and appropriate intervention.

Making connections in countries and across borders, and supporting networks, are fundamental to my work as an HAEi RPA. I guided a diagnosed but untreated Kenyan patient with a referral to the Nairobi ACARE center for specialist evaluation. A patient from Benin recently sought guidance following a dual diagnostic concern involving HAE and lupus disease. The patient is now under the care of the Nairobi ACARE center.

In collaboration with Dr Priya Bowry from the Nairobi ACARE, we identified the need for a clear referral system to specialist centers for HAE patients. We shared our initial draft with Prof Jonny Peter at the South Africa ACARE center, and worked together to refine the organogram. Prof Peter also shared his experience and expertise on HAEis Virtual Angioedema Centers and online consultations (implemented in South Africa) with the Nairobi ACARE center to support the creation of a consistent online consultation service for Kenya.

The Sub Sahara Africa region has seen a number of representatives join the HAEi LEAP program in 2025 and 2026. Our 2025 graduate, Daniella Essa from Mozambique, is spearheading the creation of a pan Sub Sahara Africa youngsters group. The aim is to foster peer support, strengthen self-advocacy, and build capacity among young patients. I’m encouraging all the youngsters I have contact with in my region to join (with permissions secured from parents where appropriate).

We’ve seen real progress in advancing HAE awareness in the first quarter of 2026, and look forward to expanding the reach of my activities to ultimately improve outcomes for patients across Africa.