FACS Forum Ireland was formed as the result of campaigning by Karen Keely. Karen is a mother, living in Ireland, with three sons diagnosed with severe birth defects (Fetal Anti Convulsant Syndrome –FACS) as a direct result of taking sodium valproate for epilepsy. Karen Keely has contended for many years that advice given to patients by both industry and the health services in Ireland have been inadequate, despite the availability of extensive research on birth defects and sodium valproate. She is the Irish Liaison Officer for OACS UK, a parents support group.
The FACS Forum was established as a result of Karen’s constant efforts to raise the issue. Epilepsy Ireland, The Disability Federation of Ireland, the Medical Research Charities Group and Genetic Rare Disease Organisation formed the initial members of the forum. We were then joined by the Migraine Association of Ireland and subsequently Shine.