In 1999 Roger Wilson was diagnosed with an extremely rare form of soft tissue sarcoma. Roger discusses the difficulties encountered patients suffering from such rare diseases and explains how in 2003 he and his wife Sheelagh formed Sarcoma UK. Sarcoma UK was established as an information and support organisation for patients with these rare cancers and by 2007 was working with 600 other patients and national organisations such as NICE, the National Cancer Action Team, Macmillan Cancer Support and the National Cancer Research Institute. In March 2011 Sarcoma UK became a registered charity and now has a small full time staff, a growing research programme funding scientific and medical research and a group of volunteers running local support groups and on-line support resources.