The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease is a multi-disciplinary group of experts committed to accelerating the time to diagnosis.
With the Global Commission, RDI advances equitable access to diagnosis, with a particular focus on regions with limited pathways to rare disease diagnosis.
About half of rare diseases appear in childhood.
Where data is available, estimates show that it can take over five years to reach an accurate diagnosis. Often a satisfactory diagnosis is never established.
By developing roadmaps and pilots, the Global Commission aims to end the diagnostic odyssey for children and families across the globe.
The long journey to diagnosis is often longer in low-and-middle-income countries.
RDI promotes the inclusion of international perspectives and experiences of diagnosis in the Commission’s positions and pilot initiatives.
- Global survey on rare disease patient’s journey to diagnosis with the EURORDIS RareBarometer survey project
- Policy & Advocacy Working Group – dialogues on Centres of Excellence; Genetic Screening and Newborn Screening ; and Data Sharing & Privacy
- Patient Empowerment & Awareness Working Group – developing the RareNavigator tool