TGDOC Disease Subgroups
TGDOC has several disease-specific Subgroups, comprised of representatives of the Core and Affiliated Member Registries who collect data on each relevant disease. Where possible, Patient Representatives from disease area are also included in TGDOC Subgroup activities.
The TGDOC Subgroups provide an environment to discuss challenges, share best practice, network and collaborate with colleagues from around the globe who operate in the same disease area, and are an important and valuable part of TGDOC activities. Subgroups meet at least twice per year (in person when possible and virtually if not), and updates are reported in the TGDOC Quarterly newsletter.
Currently, TGDOC Disease Subgroups exist for DMD, SMA, DM, FSHD, LGMD and Ultra-Rare NMDs. Each group is coordinated by one or more Subgroup Lead(s) who report to the TGDOC Executive Board. See the TGDOC Subgroup Lead Terms of Reference for further information.
The TGDOC Subgroup Leads are listed below:
Ultra-Rare NMDs Subgroup Co-Lead
Jo Bullivant is a Research Project Manager in the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University, UK. For almost 6 years, Jo’s work at the JWMDRC has …
United Kingdom
LGMD Subgroup Lead
Dr. El Sherif received her training on muscle disease in the National Institute of Neuroscience, NCNP, Tokyo Japan under the supervision of Dr. Ikuya Nonaka, who supervised her Doctorate degree …
Egypt
Ultra-Rare NMDs Subgroup Co-Lead
Robin Forbes is a Genetic Counsellor who has worked in the multidisciplinary Neuromuscular clinic at the Royal Children’s Hospital in Melbourne since it began in 2008. This clinic oversees the …
Australia
SMA Subgroup Co-Lead
Dr Victoria Hodgkinson is the National Program Manager for the Canadian Neuromuscular Disease Registry, where she oversees the scientific management and coordination of national patient registries in neuromuscular disease. Her …
Canada
DMD Subgroup Co-Lead
Ann Martin, MS, CGC is a certified genetic counselor with Parent Project Muscular Dystrophy (PPMD) and Director of The Duchenne Registry (formerly DuchenneConnect).
United States of America
DM1 Subgroup co-lead
Dr Peric is a teaching assistant in Neurology and neurologist at the Neurology Clinic, University Clinical Center of Serbia. He has a PhD in Molecular Medicine that investigated the functional and …
Serbia
SMA Subgroup Co-Lead
Miriam Rodrigues is a genetic counsellor whose dedication to rare neuromuscular disorders began when she was appointed Membership Services manager at the Muscular Dystrophy Association of New Zealand (MDA NZ) …
New Zealand
DM1 Subgroup Lead
Richard Roxburgh, MB ChB, FRACP, PhD, runs a Neurogenetics clinic at Auckland City hospital covering neuromuscular diseases as well as ataxias, hereditary spastic paraparesis and Huntington’s disease. At the University …
New Zealand
FSHD Subgroup Lead
Rossella Tupler is a medical geneticist, expert in the molecular genetics of degenerative diseases. Her laboratory at the University of Modena and Reggio Emilia, Modena, Italy, contributed significantly to the …
Italy
DMD Subgroup Co-Lead
Ilaria Zito, BSc, PhD, specialized in Medical Genetics. She obtained her Science Degree at “La Sapienza” University in Rome, her PhD degree in Molecular Genetics at UCL in London and …
Italy