Mark Mencias is clinical nurse specialist who set up a nurse-led neurogenetics clinic based in Atkinson Morley Regional Neurosciences Centre in St George’s Hospital. The nurse-led service works with the multidisciplinary team and the link between neurology, clinical genetics and research. He is council member of the British Myology Society and a steering committee member of the UK FSHD Patient Registry. Mark has a research background in drug development in rare and ultrarare diseases.