The ISPAD Rare Diabetes Collection was proposed at the annual meeting in Vienna 2001. It was felt that there were many rare forms of diabetes, which physicians would have very little experience of as they would only see a small number. It was hoped that by establishing a rare diabetes collection that it would be possible to pool information on these patients helping to assist with diagnosis, recognition of new syndromes and management.

The ISPAD Rare Diabetes Collection is a central resource based in Exeter in the UK which physicians can contact and provide clinical details on rare types of diabetes, as well as depositing blood which would be stored as DNA. With the express permission of the referring physician, the DNA would be sent to scientists throughout the world who would be able to make a molecular genetic diagnosis if the gene is already known or who were researching on the particular rare type of diabetes if the gene was unknown.

It is hoped that the central facility would collect rare cases of diabetes syndromes that had not been reported as it might well be that new clinical syndromes would start to be recognised. A recent example of this is the Renal Cysts and Diabetes Syndrome associated with HNF-1b mutations that has only been recognised in the last 3 years.

We hope that patients with rare types of diabetes and their doctors will be keen to contribute to this international resource to help our understanding of rare forms of diabetes. It is likely that as well as clarifying patient care and management, that there will also be new scientific insights from this work. ISPAD is keen that such work be encouraged under its auspices.