DMD Care UK will provide education and training opportunities for healthcare professionals and families to raise awareness of the care recommendations for Duchenne muscular dystrophy.
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Representatives from each DMD Care UK working group presented their progress so far and priorities for their area of care in London on 29 February 2024. Watch the recordings from the meeting below.
Consultant cardiologist Dr John Bourke presents from the cardiac care working group
Consultant paediatric endocrinologist Dr Jarod Wong presents from the bone and endocrine working group and gives an update on vamorolone
Dr Michela Guglieri presents on corticosteroids and their effects in DMD
Consultant neurologist Dr Vasantha Gowda and Professor Tracy Willis present from the emergency working group
Parent representative and Senior Lecturer in Special Education Janet Hoskin presents on education support
Dr Laurie Cave and Dr Jarod Wong present from the nutrition working group
Orthopaedic surgeon Mr Phil Henman presents on delivering standards of orthopaedic care
Professor Derek Willis gives an update on delivering standards of palliative care
Dr Anna Mayhew presents on delivering standards of physiotherapy care
Professor Volker Straub and patient representative Sheli Rodney present on delivering standards of psychosocial care
Consultant in home ventilation and critical care medicine Dr Ben Messer presents on delivering standards of respiratory care
Clinical nurse specialist Lisa Cutsey presents on delivering standards of transition care