Non-profit · 11 years
HAÖDER Digital Operating Model
International rare-disease advocacy, plus the digital and compliance backbone that lets a volunteer-run association operate like a professional organisation.
- Role
- Project manager & patient advocate
- Timeline
- 2015 – present
Context
HAÖDER represents patients living with Hereditary Angioedema — a rare, potentially life-threatening condition. Like most patient associations it runs on volunteers, which means process discipline is the difference between sustained impact and burnout.
Approach
- Led international advocacy, representing Turkey at global rare-disease and HAE forums.
- Built partnerships with healthcare organisations and international patient bodies.
- Designed the association's digital operating model — process documentation, financial and compliance workflows aligned to Turkish association law.
- Built reusable AI tooling for reporting, event management, and document production.
Outcome
- 15+ events uniting patients, clinicians, and policymakers.
- Sustained Turkish representation in international rare-disease advocacy.
- An operating model that survives volunteer turnover — the actual test of process design.
Stack
Process designCompliance workflowsAI toolingDocumentation systems