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Living with cerebrotendinous xanthomatosis: patient, caregiver, and expert perspectives

The start-up meeting took place in Barcelona, Spain in February 2017, followed by one meeting of the subgroup coordinators in Heidelberg, Germany in November 2017 and a face-to-face meeting for the whole guideline group in Athens, Greece in September 2018 (at the meeting of the Society for the Study of Inborn Errors of Metabolism (SSIEM))