Phillippa has been involved with several charities over the years and has knowledge of neuromuscular conditions, along with experiences of meeting people from different sections of the rare community. She has served two terms as a Trustee for MDUK which covers all neuromuscular conditions, and at present, is the Adult Support Worker at Wolfram Syndrome UK and is a keen campaigner to improve the lives of families affected by this, and other rare conditions. Phillippa has many years’ experience of working in the rare disease field, on various aspects and meetings involving parliamentarians, clinicians, scientists and commissioners, and has been part of research projects and knows the challenges to come going forward.