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Mary Vasseghi - World Patients Alliance

Mary Vasseghi (nee Desmond) RGN, RM, BSc, MBA.

Recently retired, she is as a PhD student in the school of medicine, Trinity College Dublin, conducting a mixed method research project on Tuberous Sclerosis complex (TSC), a disease her daughter has. The primary aim of the study is to build a body of data, to inform the development of an internationally recognised standard of care for patients with a diagnosis of TSC in The Republic of Ireland. There is a paucity of information about individuals affected by TSC, how they are affected, coping and the healthcare they are receiving.

Mary worked as a patient advocate in parallel to her professional life in healthcare and teaching for eighteen years. She began her advocacy work when her 18-year-old son Darius, died from sudden cardiac death SADS in 2005. Initially her work was focused on the cardiac field but spread into wider patient advocacy and patient safety areas. She has been the patient voice on numerous committees at national and international levels, many by ministerial appointment, and she was a member of the advisory team on the WHO patients for patient safety programme. She is currently an ePAG on ITHACA (Intellectual Disability Telehealth And Congenital Malformations and Intellectual Disability) ERN, the patient representative on The Irish Rare Disease Clinical Trial network management team, a committee member of the Irish Heart Foundation Sudden Cardiac Death Council, Tuberous Sclerosis Complex Ireland, and Patients for Patient Safety Ireland.

Patient advocacy and improving patient safety is her passion.