So, a statement by Dr Marc Tischkowitz " I am in favour of better systematic NHS care for people with rare disorders through setting up networks of multidisciplinary clinics with key specialists. There are excellent examples of this for other conditions in the UK e.g. Neurofibromatosis Type 2 which was funded by the National specialist commissioning advisory group (NSCAG). Sadly this national funding route was closed to new applications back in 2011/12 and has not been replaced ". Obviously better co ordinated care would lend itself to trials of Rapamycin. We need to keep going raising awareness and calling for people with cowden syndrome to be listened to. We now have new leads to follow up and are already on it! Please keep sharing. I appreciate your support xx