– 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.
– 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.
– 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.