Claire Behan will present at the TSC conference on October 12th 2024. Claire is an Advanced Nurse Practitioner, an epilepsy specialist, a Ph.D candidate and a researcher with FutureNeuro. This paper from 2022 concluded that coordination of TSC disease management in Ireland is poor and that care is often fragmented and difficult to navigate.  A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000.  An ‘orphan complex’ is a psychological character often shaped by a history of abandonment, neglect, and non-belonging. Tuberous-Sclerosis-A-Rare-Disease-with-an-Orphan-ComplexDownloadRead More