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These outcomes may relate to the intrinsic value of information, the knowledge about the condition and the opportunity to make plans for the family or the future. https://images.squarespace-cdn.com/content/v1/5592b021e4b033a211e8dd00/1696029166589-QIZN8RIQRWH49OAJ7OU5/Screenshot+2023-09-29+at+4.11.48+PM.png Rare Disease Advocacy - How to make it happen: Building a partnership to enable federated data systems Over the course of two years, the World Economic Forum led the Breaking Barriers to Health Data project with genomic institutions in Australia, Canada, the UK and US to create a model to share rare disease data across borders in a federated data system.