TREAT-NMD Ethics Board (TEB)
The TREAT-NMD Ethics Board (TEB) identifies and examines ethical and social aspects of research taking place in the context of TREAT-NMD.
Mission Statement
The TEB is a voluntary multidisciplinary group comprised of clinicians, scientists, parents, ethicists and legal academics, patients and representatives of parent organisations. The TEB works in a collegiate, collaborative and inclusive manner to provide ethical guidance and balanced opinion in order to enhance the excellence TREAT-NMD aspires to.
Membership
Membership of the TEB is voluntary and drawn from the initial TREAT-NMD partner network, interest groups and invited external members. Members with special expertise, patient representatives, and other relevant groups may be co-opted as necessary.
Chair
Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the World Duchenne Organization (UPPMD). She is the mother of an …
Netherlands
Vice-Chair
Francesco Muntoni (Professor in Pediatric Neurology, FRCPCH, FMedSci) is Director of the Unit with oversight of both clinical and research activities.
United Kingdom
a.m.rus@lumc.nl
Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center.
Netherlands
Since Fabiola’s adopted son was diagnosed with Facioscapulohumeral Muscular Dystrophy in 2005, Fabiola became deeply involved in the world of neuromuscular diseases. In Italy, Fabiola has been an active member …
Italy
Alesandra Ferlini is a professor in medical genetics, director of the Medical Genetics section at the University of Ferrara (Italy), and coordinator of the EU funded BIO-NMD project. Her experience …
Italy
joseph.irwin@treatsma.uk
Member of Treatsma.uk looking after matters regarding regulatory affairs, advocacy, access to treatment, charities compliance and related matters.
United Kingdom
Dr. Jan Kirschner is coordinator of the TREAT-NMD Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan has been joint coordinator of the German network for neuromuscular disorders MD-NET …
Germany
Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM TELETHON Board of Directors also member of the board of SMA Europe (association of …
France
Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women’s and Children’s Health of Karolinska Institute and consultant paediatrician at the Astrid Lindgrens Barnsjukhus (Stockholm, Sweden).
Sweden
Dr Simon Woods is a bioethicist at the Policy, Ethics and Life Sciences Research Centre (PEALS). He is a member of a number of research and clinical ethics committees and …
United Kingdom