IMPORTANT—BEFORE YOU BEGIN

  • Use laptop, desktop computer or tablet with large screen if possible. Our registry is not currently optimized for smaller screen mobile devices
    DISABLE ANY AD BLOCKERS, POP-UP BLOCKERS, OR CONTENT FILTERS
  • Take your time! Allow 20-30 minutes to complete the questionnaire
  • Be patient! There may be a short delay between questions, as the Registry tabulates your responses and determines the the appropriate follow-up question(s)
  • Be prepared! Reduce registration time by having any medical documentation you might upload either close at hand, or already scanned: these include a formal letter of diagnosis, if available; and a copy of a cardiac ultrasound report, if available
  • Be square! Although the Registry accepts horizontal or vertical photos, square photos work best

Thank you for your patience. Your participation in the Global Registry will help advance our understanding of Ehlers-Danlos and related disorders.