Sam lives with an ultra rare condition that affects his daily life, but he was only diagnosed after he was married and became aware of the rare disease community. Since then he has travelled the world making connections and sharing expertise and experiences about rare diseases.
Co-Lead for the Raising Awareness of Rare Diseases Throughout All Communities (RARDTAC) project, Sam is keen to support people living with rare diseases. He drives community engagement in the Ards and North Down borough council area, contributing to multiple research projects locally and internationally as a formal co-investigator.