The research, readable.

Every entry: a citation, a one-paragraph plain-language summary, and a link to the source. Tagged by condition and topic so families and clinicians find what concerns them.

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

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

Example entry: a peer-reviewed paper summarised for families example

This is what a library entry looks like. The named maintainer replaces it with real curated publications: citation, plain-language summary, source link, and condition tags.

Journal · DOI link · topic tags

Maintained by: to be named at the AGM (Documentation lead coordinates).See something missing? Suggest an addition.