How the 423 responses were collected — methodology, recruitment and representativeness limits.
Distributed via patient communities concerned with mast cell disorders, lipedema, hEDS and POTS, in French and English — not a random general-population sample.
Voluntary and anonymous survey, open to anyone who recognized themselves in the described terrain, with no prior formal diagnosis required.
Identification data (email for updates) kept separate from survey responses, GDPR-compliant.
Survey conducted late 2025 / early 2026, final results published April 2026, ahead of Preprint 1.