Many people with rare diseases tell  that the care and treatment that they receive is poorly coordinated, no matter from which country they are coming from, which has a detrimental impact on their care and the lives of their families.

This is a reason why families believe that every patient with a rare disease should therefore have access to a named care coordinator or case manager.

A case manager is a trained professional who is responsible for ensuring that a care plan is in place and carried out. They can greatly assist in ensuring coordination and continuity of care, so that care is provided as smoothly as possible for the patients they support.

Care coordinators are also available to support the practical and emotional needs of patientº families or carers throughout the progression of the condition. They may also provide vital education to other professionalº to enable appropriate care and support to be provided.