A network for research and multidisciplinary medical care for oculocutaneous albinism in the DR Congo.

Oculocutaneous albinism (OCA) is common in Central Africa. It is associated with significant morbidity and mortality, due to vision problems and skin manifestations, including cancer. Moreover, patients with OCA, especially children and adult females are confronted with societal discrimination and violence. They thus constitute a very vulnerable group of persons. To improve their quality of life, we focus on their (often unmet) medical needs. We will create an expert network of complementary medical specialists with experience in OCA, in 3 sites in the DRC. We will establish strong links with patient support groups. We envisage a durable change in the approach of patients with albinism in the DRC by providing accessible, evidence-based medical care, by multidisciplinary expert teams employing tailored electronic health records. This will equally provide a strong basis to promote long-term follow-up and research and thus capacity building. This strong network will provide the anchoring point for future initiatives to promote well-being of persons with albinism, including psychosocial and legal aspects.