Children with rare or undiagnosed diseases are sometimes unable to be looked after by their parents. The demands of a rare disease can be too much for some families, and through no fault of their own, parents must allow others to care for their child. Family members such as grandparents may take on the role of carer, or the child may enter the foster system. The role that non-parental carers take is large, and frequently under recognised. When children with rare diseases are looked after by carers, the carers must be aware of and involved in the medical assistance required by the child. In depth understanding of the needs of the child must be achieved by the carer. An appropriate level of care may not be achieved in short term homes, and as such, longer-term care should be the aim.