Activity: Talk or presentation types › Public talk, debate, discussion
Rett UK is a patient advocacy charity for relatives and care givers of Rett syndrome patients. The Rett UK Roadshow gathers professionals from various disciplines with parents and care givers. It provides an opportunity for families to meet each other, showing mutual support and sharing experiences as well as listening to high calibre presentations from key research and health care professionals working with Rett syndrome. My presentations feature my recent research findings on the causes and possible treatments of respiratory disturbances in patients with Rett syndrome. It raises awareness of the condition, its possible consequences for the patients general health and well being, and what care givers should be demanding in terms of specialist care. I also provide an up-to-date summary of other novel treatments in pre-clinical and clinical development, keeping care givers informed of potential future clinical trials.