People with a rare genetic condition called Cowden Syndrome have been forgotten. They have a massive cancer burden including breast, thyroid, womb, kidney and melenoma. The prevelance of this condition is estimated to be 1 in 200000. There is a drug called Rapamycin that can potentially help but nobody is willing to prescribe it or create large scale trials to see if it's promise really is effective in reducing the cancer burden. The NHS website does not even mention this condition . I would like to see this condition recognised on the NHS website and a trial started to look into this promising drug for people with cowden syndrome.