The idea of an ICORD Society was born when representatives of many different stakeholders met at the 1st International Conference on Rare Diseases and Orphan Drugs 2005 in Stockholm. Formation of the ICORD Society was a process where these stakeholders met and discussed ICORDs mission and aims in 2006 and 2007. The ICORD Society was formed on September 13 2007 in Brussels.

The 1st ICORD conference was held in Stockholm, Sweden (ICORD 2005), with support by Karolinska Institutet in Stockholm, the National Institutes of Health (NIH) in the US and the Research Directorate General of the European Commission.

The 2nd ICORD 2006 conference was held October 25th, as a 1-day-meeting back-to-back with the EPPOSI Meeting in Madrid, Spain, October 26-27, 2006. ICORD 2006 was a planning meeting identifying important areas for future work and planning of upcoming ICORD conferences. Seven Work-Groups were formed. The aim of these Work-Groups is to stimulate constructive international collaborations that can result in true advantages for patients with rare diseases. Each Work-Group will take steps during the subsequent year in the direction of improved international collaboration in their respective field. The Work-Groups will present these steps taken, with minor or major advantages or improvements in international collaboration, at the annual ICORD Conferences.

The ICORD 2007 Annual Meeting was an open 2-day-meeting in Brussels Sept 14-15, 2007, held back-to back with the European Commission conference “Rare Diseases Research: Building on Success”. In conjunction with the ICORD 2007 Annual Meeting the ICORD Society was formed.