As more and more rare syndromes are described and the clinical features of the common syndromes are enlarged upon, there have been calls for studies on long term follow up, to assess complications and prognosis. For the rare syndromes this had been slow in coming. Patients diagnosed by geneticists are rarely followed up, or seen again by them. They are mostly sent back to the referring paediatrician. This, in part, has arisen because geneticists in the …