Rett Syndrome and the Role of National Parent Associations within a European Context
Abstract
Rett syndrome (RTT) is a rare neurodevelopmental disorder arising from a genetic mutation on the X chromosome. In recent years there has been an increasing focus in Europe on developing links, both within and between countries, between researchers, clinicians, therapists, individuals with RTT and their families or caregivers in order to maximise approaches towards treatment and long-term-management of the disorder. This paper seeks to place RTT, especially the support of families living with RTT, in a European context. It explores the important role played by both the national Rett Parent Associations and the Rett Expertise Centres that exist in many of the member states of the European Union and places the contribution of both within the context of European policy on rare diseases.
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