Shire, Microsoft and EURORDIS form rare disease alliance

pharmafile | February 20, 2018 | News story | Manufacturing and Production, Research and Development Microsoft, Shire, eurordis, pharma, rare disease 

Rare disease specialist pharma firm Shire, rare disease patient alliance EURORDIS and tech giant Microsoft have announced they have formed a partnership focused on addressing diagnostic challenges with rare diseases, aiming to provide support and shorten the time it takes for patients and their families to reach a conclusive diagnosis.

Between 300 and 350 million people across the world are affected by one of the 6,000 identified rare diseases, and half of this number are children. The alliance, known as The Global Commission to End the Diagnostic Odyssey for Children, was formed to take action to improve the quality of life for rare disease patients, including the development of an actionable roadmap to cut down the diagnostic journey of rare diseases, which currently takes an average of five years.

The roadmap will include recommendations to solve key problems that stand in the way of timely diagnoses today, including the provision of “high-level policy guidance” to better health outcomes for patients with rare diseases, and to enable physicians to better identify and diagnose these diseases so treatment be started earlier. The Commission also aims to empower patients and their families to take more active control of their healthcare.

“As a physician with training in paediatrics, I’ve seen first-hand the devastating effect not having an accurate diagnosis can have on patients, their families, as well as on the health care providers working to help them. Accelerating the time to diagnosis is critical to improving outcomes for patients and health systems,” said Flemming Ornskov, CEO of Shire. “This Global Commission is passionate about bringing forward new and personalised solutions in diagnostics and I’m confident our work will help to transform the lives of children living with a rare disease.”  

The Commission will start work early this year to gather key insights from expert advisors and rare disease patients and their families, with plans to release its advisory roadmap at the beginning of next year.

Matt Fellows

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