Tuberous Sclerosis Australia: a case study of a maturing patient-driven organisation

Abstract

Purpose – Tuberous Sclerosis Australia (TSA) is a small rare disease organisation with a large scope. TSA was established in 1981 as a peer support organisation. Since then, its role has evolved to meet the needs of its members: individuals living with tuberous sclerosis complex (TSC), their families and health professionals. The paper aims to discuss these issues. Design/methodology/approach – This case study describes the diverse activities of TSA which include, but are not limited to: the provision of information and support services; sponsorship of research and fostering a network of TSC health professionals. The benefits of collaborations forged under the umbrella organisation TSC International are highlighted. Findings – The case study demonstrates some of the key challenges TSA faces, challenges shared by many similar health charities. These include: funding of health education and promotion activities; working with a large range of health professionals and the challenge of research fatigue. Originality/value – There is little research published describing the work of small disease specific organisations similar to TSA. This case study provides insight for those collaborating with similar organisations including health professionals and researchers.