Mission 2 · Flagship project
A registry owned by the people it describes.
Research on limb agenesis is starved of data: cases are rare, scattered across countries, and recorded in incompatible systems, when they are recorded at all. Families answer the same questions again and again, and science still cannot see the whole picture.
01 · The answer
The first international, patient-owned registry of limb malformations.
DysNet carries a registry that is international and interoperable by design, owned by the patient community itself, developed with member associations, and replicable for other rare conditions. It is the concrete answer to what DysNet membership returns to families: their data, working for their care. Once live, the registry will be declared in Orphanet’s European directory of rare-disease registries, where researchers already look for data sources.
02 · How it works
Associations contribute; the community governs.
Families contribute
Through their national association, on explicit consent, in their own language.
Data stays governed
The community decides what is collected and who may use it, for care and research only.
Research gets fuel
Interoperable, comparable data across countries, at last.
New to the idea? The two-minute guide
03 · The partner
Built with Health Data Safe.
Health Data Safe, a Swiss non-profit foundation specialised in patient-governed health data infrastructure, is proposed as the registry’s technical and operational partner. The mandate is submitted to the DysNet AGM of 26 August 2026.
04 · Progress
The log.
Registry
Mandate proposal before the AGM
The refocused strategy, including the registry mandate, is on the AGM agenda. Every board member commits to seeking grants for the registry.
Funding
First grant application in preparation
A rare-disease research application is in preparation on the French side; EU rare-disease calls are being screened.
Take part
Your association can be a pilot.
The registry grows association by association. Write to info@dysnet.org to join the first wave.