by Sohna Ann
When Sainabou Laye Ndure founded the Human Genetics Awareness Association (HuGAA), it was driven by a simple but urgent realization—many people in The Gambia and across Africa have little understanding of genetics.
This lack of knowledge often leads to fear, misconceptions, and stigma surrounding inherited conditions, leaving many affected individuals and families misunderstood and unsupported. A pioneering Gambian genomic scientist and global health researcher, Sainabou is dedicated to changing that reality through education, advocacy, and community engagement. Sainabou made history as the first African to graduate with a Master of Science in Genomic Medicine from the University of Oxford. She was also the first Gambian and the first Africa Oxford Initiative (AfOx) scholar admitted into the programme. She previously worked as a Scientific Officer at the Medical Research Council The Gambia, contributing to genomic research and disease surveillance, and is currently pursuing a PhD at Queen Mary University of London, where her research focuses on genomic medicine and precision healthcare. Despite her academic achievements, Sainabou recognized that scientific progress alone is not enough. She believes genetics should not only be scientifically advanced but also socially understood. That belief inspired the creation of HuGAA.
The organization’s mission is to improve genetics literacy across Africa by raising awareness, promoting education, reducing the stigma associated with genetic conditions, and advocating for access to genetic services, counseling, and research. HuGAA also seeks to inspire young Africans to pursue careers in genetics and biomedical research while promoting early action, prevention, and better care for individuals living with inherited conditions. Since its establishment, HuGAA has launched several awareness initiatives aimed at bringing genetics closer to communities.
The organization made history by hosting the first-ever World Human Genetics Day celebration, creating a platform for conversations on genetics and inherited diseases. It has also organized webinars, awareness walks, and social media campaigns to educate the public about genetics and its role in everyday health.
Looking ahead, HuGAA has ambitious plans to expand its impact. Among its upcoming initiatives is the “Training the Trainers” programme, which will equip individuals with the knowledge and skills needed to educate others about genetics and genetic conditions within their own communities.
The organization also plans to introduce a “Training for Caregivers” initiative to better support those caring for people living with genetic conditions. In addition, HuGAA intends to conduct school outreach programmes to educate young people and create awareness at the grassroots level. Sainabou says collaboration will be key to achieving these goals.
HuGAA welcomes partnerships with individuals, organizations, academic institutions, healthcare professionals, and development partners who share its vision of improving genetics awareness and healthcare across Africa. According to HuGAA, genetics awareness is essential because it empowers people to understand inherited diseases, make informed reproductive and healthcare decisions, reduce stigma, and encourage early diagnosis and prevention. Greater public understanding can also improve disease management and contribute to stronger healthcare systems.
In The Gambia, sickle cell disease remains one of the most common inherited genetic conditions, while other inherited disorders found across Africa include albinism, G6PD deficiency, hemophilia, and, in some regions, thalassemia. Through increased education and awareness, HuGAA hopes to ensure these conditions are better understood, diagnosed earlier, and managed more effectively. For Sainabou Laye Ndure, the mission extends beyond science.
It is about empowering communities with knowledge, replacing fear with understanding, and ensuring that genetics becomes a tool for improving lives rather than a source of stigma. Through HuGAA, she is helping build a future where every African has access to accurate information about genetic health and where no one is marginalized because of an inherited condition.
