Today, too many children around the world are suffering from rare diseases that remain undiagnosed as parents struggle to navigate complex health systems and receive multiple misdiagnoses. Eliminating barriers to an accurate and early diagnosis can lead to faster treatment, with life-altering results.


Shire, Microsoft and EURORDIS have joined forces to address this urgent challenge by launching the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.


We believe a cross-sector approach – and technology innovation – is needed to overcome the barriers to diagnosis.

Commission members are a multidisciplinary group of experts and creative thinkers. Following the Commission’s deliberations over the next year, we plan to publish a report with recommendations and a roadmap to reduce diagnosis time in January 2019.

As champions for the millions of people living with a rare disease, we are optimistic that the Commission’s work will transform the lives of children with a rare disease.


More information coming soon. In the meantime, take a look at the following resources for more information.