schema: eds-research/venues/v1
venues:
  - id: venue-inspire-eds-hsd
    name: EDS and HSD Support Community (Inspire)
    kind: forum
    host: Inspire
    url: https://www.inspire.com/groups/eds-and-hsd/
    access: registration
    scale_display: largest dedicated EDS support community
    moderation: professional
    note: Sponsored by The Ehlers-Danlos Society as an Inspire trusted partner.
  - id: venue-reddit-ehlersdanlos
    name: r/ehlersdanlos
    kind: subreddit
    host: Reddit
    url: https://www.reddit.com/r/ehlersdanlos/
    access: public
    scale_display: 100k+ members
    moderation: volunteer
    note: High-volume public venue; strong norms against individual medical advice.
  - id: venue-reddit-hypermobility
    name: r/Hypermobility
    kind: subreddit
    host: Reddit
    url: https://www.reddit.com/r/Hypermobility/
    access: public
    moderation: volunteer
  - id: venue-bens-friends-eds
    name: Ehlers-Danlos Syndrome Support (Ben's Friends)
    kind: forum
    host: Ben's Friends rare-disease community network
    url: https://ehlersdanlossyndromesupport.org/
    access: registration
    moderation: volunteer
    note: Publicly readable threads; long-lived venue with strong mutual-support norms.
  - id: venue-ehlers-danlos-society
    name: The Ehlers-Danlos Society
    kind: patient-org
    host: ehlers-danlos.com
    url: https://www.ehlers-danlos.com/
    access: public
    moderation: professional
    note: Largest international patient organization; operates the DICE Global Registry, EDS ECHO, local groups, and research programs.
  - id: venue-zebra-network
    name: The Zebra Network
    kind: patient-org
    host: thezebranetwork.org
    url: https://thezebranetwork.org/
    access: public
    moderation: volunteer
    note: Patient-designed support network; the zebra is the community's emblem.
  - id: venue-facebook-eds-groups
    name: Facebook EDS and hypermobility groups
    kind: social-group
    host: Meta
    url: https://www.facebook.com/
    access: membership
    moderation: volunteer
    note: Multiple large closed groups; researchers have used them for survey recruitment.
  - id: venue-dice-registry
    name: DICE EDS and HSD Global Registry
    kind: registry
    host: The Ehlers-Danlos Society
    url: https://www.ehlers-danlos.com/registry/
    access: membership
    moderation: professional
    note: Structured patient-reported registry; sources the society's published survey analyses.