Knowledge · Resources

Resources on limb difference: guides, surveys and reports.

Reference works, surveys and reports that families, clinicians and associations return to, each with a short description and a link to the source. Peer-reviewed papers on our conditions live in the bibliography.

Starting points

Orphanet condition sheets on limb reduction defects source

The European reference database for rare diseases documents the conditions grouped under dysmelia, from amelia to ulnar hemimelia. Our Understanding dysmelia guide is built on it.

Orphanet · orpha.net · encyclopedia for patients · topic: conditions

Rare Barometer: how rare-disease patients experience care source

EURORDIS’s large-scale survey programme, to which DysNet contributed content and translations, gives an updated picture of life with rare conditions including bone and limb diseases.

EURORDIS · eurordis.org/rare-barometer · topic: lived experience

Recommendations for improving the quality of rare disease registries peer-reviewed

The European reference on what a rare-disease registry is and how to run one well: definition, governance, data quality, patient involvement and sustainability. The yardstick DysNet uses for its own initiative.

Kodra Y, Weinbach J, Posada-de-la-Paz M, et al. Int J Environ Res Public Health 2018;15(8):1644 · doi:10.3390/ijerph15081644 · topic: registries, research methods

Biorobotics for limb difference: conference proceedings, Milan 2026 DysNet event

Findings from the conference DysNet co-organised at Regione Lombardia (Palazzo Pirelli, 26 March 2026) with university researchers, prosthetics producers and patient associations.

DysNet & Regione Lombardia · report available to members · topic: prosthetics, biorobotics

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