Advocacy skills webinar · Cerebral Palsy EU
Practical advocacy training shared with all member associations.
Mission 2 · The international associative registry
The registry of limb malformations, owned by the families it describes.
Each highlighted country is an association ready to bring its families’ knowledge into one shared, patient-governed registry. Hover a country to see who.
- –countries
- –associations
- –associations piloting the registry
Show
Grey dots are estimates (prevalence × population, GHSL 2025 population grid, EU JRC). The registry’s purpose is to turn these estimates into known, consented cases.
Member association
Piloting the registry (Assedea, Raggiungere)
Contact opened
DysNet office
Area covered by a population registry of congenital anomalies
Area a registry is starting to cover
Care centre named by a member association (click for details)
Research team publishing on our conditions (click for details)
Grey dot: one estimated person living with a limb difference (1 dot = 1 person at city zoom; 10, 100 or 1,000 people when zoomed out), computed from prevalence × population. This is the situation as statistics describe it; the registry exists to make it visible. Choose the condition above.
Every marker is also listed, in full, on the care centres, researchers and registries pages.
Map data: Natural Earth (public domain), GeoNames (CC BY 4.0), GHSL population (EU JRC, CC BY 4.0), French départements from IGN Admin Express (Licence Ouverte) via france-geojson; registry coverage after Santé publique France 2026 · rendered with MapLibre, self-hosted
01 · Five registers
What is known, being studied, and where expertise lives.
Five living registers, each maintained by a named volunteer and dated, so families and clinicians always know how current the information is.
Bibliography
Peer-reviewed publications on our conditions, searchable by condition, theme and year.
Registries
The registries that already record our conditions, from EUROCAT to the French population registries.
Researchers
Who works on limb difference, where, and how to reach them.
Care centres
Reference and competence centres, in Europe and beyond.
Teratogens register
Substances of concern for the unborn child, by source and by jurisdiction.
02 · Flagship
The first international registry of limb malformations, owned by patients themselves.
Research on limb agenesis is starved of data. DysNet carries the first international, interoperable registry developed with member associations and replicable for other rare conditions. This is what membership returns to families.
03 · One voice
Where European decisions are made, families are in the room.
DysNet holds chosen seats at EURORDIS, the European Disability Forum and ERN BOND, each with a named delegate and a written report to members after every meeting.
VOICE4ALL kicks off
DysNet joins the EU project on autonomous voting rights for persons with disabilities.
Biorobotics at Regione Lombardia
DysNet co-organised a biorobotics conference at Palazzo Pirelli, Milan.
04 · The network
Our members are the associations families actually belong to.
From Reach in the UK and Raggiungere in Italy to Aussiehands in Australia and AVITE in Spain: more than thirty organisations across fourteen countries, on four continents.