What is RDI

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 an international network currently embedded in EURORDIS, which supports the development of RDI. It is governed by a Council, elected by RDI members in April 2016. In coming years the Council and members of RDI will decide if and when to register RDI as a separate organisation with its own legal identity. The initial focus is on taking action and gaining experience of working together.

Photo of RDI launch meeting in Madrid in 2015

EURORDIS Rare Disease International RareConnect Rare Disease Day European Conference on Rare Diseases