Who are we?

RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases.

RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.

RDI is governed by a Council, elected by RDI members in April 2016. The initial focus is on taking action and gaining experience of working together.

Photo of RDI launch meeting in Madrid in 2015