How Sharon Terry Is Empowering People to Shape Their Own Health Outcomes
Sharon Terry is one of the most remarkable figures in the history of patient advocacy and genomic medicine. When her two children were diagnosed with pseudoxanthoma elastica (PXE) — a rare genetic disorder — Sharon and her husband Patrick had no medical background. But they refused to accept that nothing could be done. They taught themselves genetics, established a patient registry, collected tissue samples, and ultimately co-discovered the gene responsible for PXE.
From Patient Advocate to Genomics Pioneer
Sharon went on to found the Genetic Alliance — a network of more than 10,000 organisations, companies, and government agencies working to transform health through genetics and genomics. She has been a tireless advocate for patient empowerment, data sharing, and the democratisation of genomic information.
Her core message: patients are not passive recipients of healthcare — they are active participants who can shape their own health outcomes when given access to information, tools, and community.
Lessons for India’s Genomics Journey
Sharon’s story holds powerful lessons for India’s genomics ecosystem. As genetic testing becomes more accessible and affordable, Indian patients and families need the same tools that Sharon championed: access to their own genetic data, plain-language explanations of what it means, and expert genetic counselling to translate insights into action.
MapmyGenome shares Sharon’s vision — that every individual deserves access to their genetic information and the expert guidance to act on it.
Take Control of Your Health with Genomic Insights
Genomepatri by MapmyGenome gives you access to your genetic health profile — covering 100+ health conditions, nutrition, fitness, and drug response traits — with certified genetic counselling to help you understand and act on your results.
