A huge thank you to all who attended the Patient Conference in Manchester on the 6th October 2018. It was a pleasure to welcome and meet with all. Feedback from attendees and speakers alike has been extremely positive with all those who commented confirming how informative and enjoyable it was.
It is always good to see and hear the benefits individuals and family members gain from networking and meeting others with the condition, and gathering all the latest information on the various aspects of the condition, treatment options and potential new drug development and forthcoming clinical trials. As a group it is also extremely helpful for us to hear about issues which arise for individuals accessing treatments, and this year Trustees will pick up a number of issues i.e clarification of appropriate diagnostic testing techniques for jaw cysts from the Royal College of Radiologists; and approaching NICE to address the inconsistencies around prescription exemptions for sun screen for Gorlin Syndrome patients, to name just two. Keep an eye on the website for updates in the coming months.
Thank you for your input and contributions, and for making the event a successful one.