The COIN team

The problem we refuse to accept

Families across South Africa living with a rare, undiagnosed disease can spend years moving between specialists, tests and inconclusive results before they ever reach a molecular answer — if one comes at all.

This is the diagnostic odyssey: exhausting, costly and increasingly solvable with the right technology.

An estimated 1 in 15 South Africans is living with a rare disease.

Genomic sequencing can shorten that search dramatically, resolving genetic causes of disease that older testing methods have historically missed. The science and the local expertise now exist. What limits how many families we can reach is funding.