3 thoughts on “Crick Symposium: Rare Diseases”

  1. The Crick Institute is opening soon, what an exciting time to be involved in biomedical research! I can understand that people have concerns over the NHS data sharing plan though, if you have a rare disorder you might be easily identified. Not that that’s what anyone would be doing with the information of course…

    1. You’re completely right to have that as an initial concern but realistically identification from a patient’s medical records shouldn’t be possible. However a lot of cases of individuals with rare diseases and disorders are a lot more willing than those with common cases to come forward and identify themselves as they know it may help their cause. With next to no funding in research for these rarer cases, patients can seem a lot more willing to help in any way they can.

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