Developing a collaborative network for cystic fibrosis in Africa: A call to action

Cystic fibrosis (CF) is a genetic disorder that remains underrecognized across Africa, where limited diagnostic capacity, low awareness, and competing health priorities contribute to delayed or missed diagnoses [1-4]. Although increasing data suggests CF is more prevalent than previously believed in Africa, survival remains poor [1]. These challenges do not only affect people with CF (pwCF) in Africa but also have implications for global understanding of the disease, particularly among populations historically excluded from CF research and treatment advances.

This communication describes the formation of a Pan-African collaborative CF network aimed at addressing disparities in CF recognition, diagnosis, and care across the continent.

We launched an inclusive network of clinicians, researchers, and advocates by leveraging professional networks, longstanding partnerships, and regional expertise. Employing participatory methods, a 42-question REDCap survey was formulated in both English and French. The survey was disseminated via email and WhatsApp in December 2024, aiming to understand member priorities, communication preferences and data collection practices.

As of August 2025, the network includes 44 members from 14 countries. Survey responses were received from 13 members across 8 countries. Five key themes emerged: transnational collaboration, advancing advocacy, establishing a Pan-African CF registry, strengthening capacity, and mobilizing funding.

This paper serves as a call to action to expand CF diagnosis, research, and care in Africa through an inclusive, decolonial, and equity-focused lens. We invite collaboration across disciplines and geographies to ensure that all people living with CF-including those long overlooked-receive the care they deserve.