Mission 3 · The voice of families
Where it counts, with a mandate.
DysNet keeps its seats but chooses them: a restricted list of international bodies active alongside researchers. Each seat has a named delegate, a written mandate, and a short written report to members after every meeting.
EURORDIS · Rare Diseases Europe
Member. Active in the Rare Barometer programme and the European Regional Task Force on Rare Diseases (with Rare Diseases International, supporting the WHO resolution on rare diseases).
EDF · European Disability Forum
Member. General assemblies and workstreams on the EU Disability Card, AI, assistive technology for employment, and accessibility.
ERN BOND · patient advocacy group
Patient representative seat in the European Reference Network for bone diseases; promoter of the Patient Journey project.
EESC · European Economic and Social Committee
Standing contacts. The EU’s consultative body for organised civil society advises the Parliament, Council and Commission, and carries a permanent group on disability rights: opinions on the EU Disability Card and on the rights of persons with disabilities are shaped here.
01 · Also active in
Projects we joined by invitation.
- VOTE4ALL / VOICE4ALL (Cerebral Palsy Europe, EU-supported): autonomous voting rights for persons with disabilities; study visits to The Hague and the Portuguese Parliament.
- Local lectures: Milan Civil Week, and an event planned around the Milano-Cortina 2026 Winter Paralympics.