News from Sub Sahara Africa

From Regional Patient Advocate Patricia Karani

2025 highlights

I have been fostering collaborative efforts with Member Organizations (MOs) across Africa to continue improving access to diagnosis, patient support, and advocacy for individuals living with HAE. My 2025 highlights are grouped into a few central themes of the efforts.

Connecting people who suspect they have HAE, with doctors, to enable accurate diagnosis
Newly diagnosed and suspected patients in Kenya, Senegal, and Mozambique were connected to local support groups, HAE specialists, and nearby ACARE centers to facilitate accurate diagnosis and appropriate treatment plans. These efforts resulted in new confirmed diagnoses in Mozambique and the establishment of an online patient support group in Senegal. I also made good progress in clinical engagement, with a physician in Sierra Leone agreeing to manage a confirmed HAE case. Work is ongoing to support both the patient and clinician in implementing an effective treatment plan.

Strengthening digital presence
Updates to MO websites and social media platforms ensure access to reliable information, educational resources, and doctor contact information. At the regional level, the HAE in Africa website was updated to include a link to the newly launched HAE Namibia website. At the same time, the HAE in Africa Facebook page highlighted key outcomes from the ASID Congress held in Nairobi in 2025.

Supporting MOs to build and grow
Helping the MOs in my region upskill and build capacity continued through targeted sessions. For HAE Mozambique, we focused on practical advocacy experiences, common challenges, and effective strategies to advance HAE advocacy, strengthen local leadership, and improve patient representation.

Hopes and goals for 2026

Looking ahead to 2026, I aim to strengthen HAE awareness and education across the region to improve timely diagnosis, expand access to treatment, and reinforce sustainable patient support structures.

Across all my MOs, I plan to support increased use of HAEi resources such as HAEi Advocacy Academy, HAE TrackR, and our research methodologies to strengthen our advocacy voice.

An ongoing focus is empowering MOs through leadership development and stronger collaboration with healthcare professionals. Deeper partnerships will ensure patients are not only diagnosed earlier but are supported, represented, and heard throughout their care journey.