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 and LGMD. 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:
LGMD Subgroup Lead
Michela Guglieri, MD, is a Senior Clinical Lecturer and Consultant Neurologist at Newcastle University and Newcastle Hospitals NHS Foundation Trust. Michela has a specific interest in care, management and translational …United Kingdom
DMD Subgroup Lead email@example.com and firstname.lastname@example.org
Ann Martin, MS, CGC is a certified genetic counselor with Parent Project Muscular Dystrophy (PPMD) and Director of The Duchenne Registry (formerly DuchenneConnect).United Kingdom
SMA Subgroup 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