Why microcephaly must be included in global rare disease agendas: Africa’s perspective

https://rarerevolutionmagazine.com/why-microcephaly-must-be-included-in-global-rare-disease-agendas-africas-perspective/ Written by Lenah Musangi, founder of Care Beyond Limits – Microcephaly Africa Foundation (CBL-MAF) Lenah Musangi is the founder of Care Beyond Limits – Microcephaly Africa Foundation (CBL-MAF), a leading voice for microcephaly advocacy and support across the African continent. She is dedicated to dismantling stigma and ensuring that children with neurological rarities are centred in global health and policy conversations In the quiet corners of rural villages and the bustling streets of Nairobi, there is a community of children whose voices are often unheard. These are children born with microcephaly, a rare neurological condition where a baby’s head is significantly smaller than expected. While the world discusses rare diseases through the lens of advanced genomics and precision medicine, for many families in Africa, the reality is far more fundamental—and far more isolated. At CBL-MAF, we believe that “rare” should not mean “forgotten”. As we look toward the global rare disease agendas of 2026, it is time to centre the African perspective, where microcephaly is not just a clinical diagnosis but a profound intersection of health equity, environmental factors and social justice.