RDI was initiated by EURORDIS-Rare Diseases Europe in partnership with the National Organization for Rare Disorders (US), the Canadian Organization for Rare Disorders, the Japanese Patient Association, the Russian Patient Union and Rare Voices Australia.

RDI was launched as a EURORDIS initiative on May 28, 2015 alongside the annual EURORDIS Membership Meeting in Madrid, Spain.

The members of RDI adopted its Statutes and voted to become incorporated as a legally independent organisation at the RDI 4th Annual Meeting on May 10, 2018 in Vienna, Austria.

Durhane Wong-Rieger, Chair of the RDI Council, and Yann Le Cam, Chief Executive Officer of EURORDIS, sign Memorandum of Understanding