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As the leader of a project called Finding of Rare Disease Genes (FORGE) in Canada, Kym Boycott is one of the top experts in the world in the application of exome sequencing to solve rare disorders. The Canadian project involves a network of doctors and scientists all across the country looking to identify patients with rare childhood conditions and refer them when appropriate for sequencing and analysis.

After her two children were diagnosed with a rare genetic condition, Sharon Terry dedicated her life to creating systems-level solutions that will alleviate burdens for consumers and build opportunities for them to be empowered in their own health care. She is the CEO of Genetic Alliance, an international non-profit organization, now in its 25th year, that is the world's largest network of health related organizations working from a consumer perspective. Genetic Alliance builds capacity within the genetics and health community by forging novel partnerships, promoting informed decision-making, and sharing individual, family, and community perspectives.