Inspiring concerted action and mobilizing diverse stakeholders to work collaboratively

Our members and 
co-chair organizations have been advancing the group's recommendations

Our Work

Ending the diagnostic odyssey in rare disease is an ambitious undertaking – and one that cannot be accomplished by any one discipline or sector. Our members are committed to global collaboration to bring creative recommendations and learnings to the field to improve the lives of children living with a rare disease.

2024 Framework for Action

This report includes the first iteration of a newly developed Framework to Guide Action in Accelerating Diagnosis for Children. Our diverse membership has developed this framework to support global, regional, and national efforts to end the diagnostic odyssey. View the report here.

Year One Report

In February 2019, the Global Commission announced actionable recommendations addressing distinct challenges within rare disease that technology is uniquely equipped to solve. The recommendations identify concrete policy and technological actions, mobilizing diverse actors to build on genetic and digital advances. View the report here.

2020 Progress Update

In May 2020, the Global Commission shared an update about its work to this point and outlined the group’s path forward. View the update here.

2021 Progress Update

In February 2021 the Global Commission an update detailing the progress that the group has made on its key recommendations since publication of its Year One Report. View the update here.

Latest News

We are optimistic that Global Commission’s work will transform the lives of children with a rare disease.