The story starts in 1984 when the Youth Committee of the Dutch League of Associations of Patients with Rheumatic Disorders started to develop the idea of working on an international level with their sister-organisations in Europe. Questionnaires were distributed across the continent and several meetings were held, which led to the first International Youth Congress held (IYC) in the Netherlands in 1989.

The aims were to make contact with young people with rheumatism, to exchange experience and information, and to set up contact networks and self-help groups in those countries where none existed. This first IYC was such a success that a second was organised in Coventry, England in 1992, hosted by Young Arthritis Care.

At the 2nd IYC it became evident that one week every three years was not sufficient to meet the need for cooperation between countries and exchange of knowledge and experience. So a working party was elected, consisting of seven people, each from a different country. Their task was to launch an international organisation of youth with rheumatism.

Thus the 1995 meeting in Berlin marked the end of this working party and the launch of the new organisation.

Following long discussions about constitution, registration and membership, the IOYR was finally born and the first board was elected.