Stickler Syndrome UK

The organisation provides information, support and signposting for affected families and works closely with specialised research and medical professionals to keep up-to-date with advances in prevention and treatment (i.e., assisting with earlier pathways to diagnosis to avoid retinal tears and detachments leading to serious vision impairment and blindness). In addition it organises conferences, webinars and other events for affected families and for professionals who want to be informed about the condition and become part of a growing community. Being part of this community helps to alleviate feelings of isolation and distress in affected individuals and families throughout the UK, especially when they are undergoing medical procedures related to the variable symptoms of Stickler Syndrome.