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Global Commission Formed to Accelerate Diagnosis of Rare Diseases in Children

NEW YORK (360Dx) – Shire, Microsoft, and EURODIS Rare Diseases Europe today announced an alliance aimed at accelerating the diagnosis of rare diseases in children.

Called the Global Commission to End the Diagnostic Odyssey for Children, the alliance brings together a multidisciplinary group of experts to develop a roadmap "to help the rare disease field … shorten the multiyear diagnostic journey," the partners said in a statement, noting that half of all rare disease patients are children.

Among the issues that the Global Commission seeks to tackle are improving the ability of physicians to identify and diagnose patients to start care and treatment. They also will seek to empower patients and their families to have a more active role in their healthcare; and will provide high-level policy guidance to achieve better health outcomes for rare disease patients.

The commission will be co-chaired by Shire CEO Flemming Ornskov; Microsoft CMO and Senior Director Simon Kos; and EURODIS Rare Diseases Europe CEO Yann Le Cam. It will start work in early 2018 to gather input from patients, their families, and expert advisors to gain insights and help drive solutions to accelerate the rare diseases diagnosis timeline. In early 2019, the Global Commission anticipates publishing a roadmap that "encapsulates the finding of its work together."

"We're seeking innovative ways to integrate emerging technologies into our efforts, which will play a critical role as we strive to impact the diagnosis journey," Kos said in a statement."