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.

New genomic sequencing technologies can shorten that search dramatically, uncovering genetic causes of disease that older methods have historically missed. The science, the technology and the local expertise are already in place, and this work is underway. The limit is scale and the need is far greater than current funding can meet.

 

So, who are we?

The Odyssey Project is a fundraising initiative. The research is already running at the Clinical Omics and Informatics (COIN) Unit in the UCT Neuroscience Institute, and we raise funds to extend it. With greater support, we can amplify our impact, reaching more South African families living with rare disease.

The Odyssey Project raises funds for genomic research. It is not a diagnostic testing service, and it is not possible to request or sign up for testing. Genomic sequencing takes place only within specific approved research studies, and is arranged by the clinical and scientific teams conducting that research.