REGISTRY - Key Persons
Job Titles:
- Member of the Steering Committee
- Patient Representative - ZNM - Zusammen Stark! E.V
Job Titles:
- Member of the Steering Committee
- Co - Chair )
Job Titles:
- Member of the Steering Committee
- Chief Executive and Parent Trustee - Myotubular Trust / United Kingdom
Job Titles:
- Member of the Steering Committee
- Senior Investigator and Chief of the Neuromuscular and Neurogenetic Disorders of Childhood Section - National Institute of Neurological Disorders and Stroke ( NINDS ) United States of America
Job Titles:
- Member of the Steering Committee
- Principal Investigator )
Job Titles:
- Member of the Steering Committee
- Independent Patient Representative / Germany
Job Titles:
- Member of the Steering Committee
- Clinical Specialist Neuromuscular Physiotherapist - John Walton Muscular Dystrophy Research Centre at Newcastle University, and Newcastle Upon Tyne Hospitals NHS Foundation Trust / United Kingdom
Job Titles:
- Member of the Steering Committee
- Consultant in Paediatric Neurology and Senior Lecturer - Guy's and St Thomas' NHS Trust and King 's College London / United Kingdom
Job Titles:
- Member of the Steering Committee
- Co - Chair )
Staff Clinician in the Division of Neurology and Senior Scientist in Genetics and Genome Biology - Hospital for Sick Children, Toronto
Canada
Job Titles:
- Member of the Steering Committee
- Genetic Counselor & Clinical Research Coordinator - Hospital for Sick Children, Toronto / Canada
Job Titles:
- Member of the Steering Committee
- Independent Patient Representative / Ireland
Job Titles:
- Member of the Steering Committee
- Senior Associate in Division of Critical Care Medicine
Senior Associate in Division of Critical Care Medicine, Director of Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program, Associate Professor - Boston Children's Hospital and Harvard Medical School
Job Titles:
- Member of the Steering Committee
- Professor for Paediatric Neurology and Neuromuscular Diseases - Children 's Hospital of the University Hospital Essen