…TIMESLOT: Thursday, 22 May 2025 16:00 CEST
…MAIN TITLE: Pediatric FSHD
…PRESENTERS: Prof. Tracey Willis (Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust, UK)
Professor Tracey Willis is a leading paediatric neurologist specialising in neuromuscular disorders. She serves as the Clinical Lead for Neuromuscular Disorders at the Robert Jones and Agnes Hunt Orthopaedic Hospital, where she has played a pivotal role in the centre achieving MDUK Centre of Excellence status for clinical care and research in neuromuscular disorders for the third time in 2023. Under her leadership, the centre also became the first in the UK to receive DMD accreditation from the World Duchenne Organisation.
In addition to her role in Oswestry, Professor Willis runs neuromuscular clinics at Birmingham Children’s Hospital. She was appointed Visiting Professor in 2018 at the Universities of Chester and Shrewsbury, where she contributes significantly to master’s programmes, particularly in medical genetics.
Professor Willis is Chair of both the UK Muscle Interest Group and the West Midlands Neuromuscular Network. She also serves on the boards of the British Myology Society (BMS) and the British Paediatric Neurology Association (BPNA). A dedicated researcher and educator, she actively contributes to the NorthStar and SMA REACH databases, with a focus on palliative care standards. She developed an e-learning module on palliative care for physicians and authored a chapter on neuromuscular emergencies in a recent textbook.
Her work in facioscapulohumeral muscular dystrophy (FSHD) includes serving on the steering committee for the FSHD Registry and as a founding member of FSHD UK. In this capacity, she is organising and leading a European Neuromuscular Centre (ENMC) workshop in Amsterdam in November 2024.