Body of Evidence: Seen and Heard

For years, people with complex neurological and connective tissue conditions have been telling us the same things. Appointments that require travel that isn't possible. Records that don't follow them. Symptoms dismissed before they're finished describing them. A psychiatric label that travels through every chart forever.

We believe that pattern is data. And data, done right, can change how medicine responds to this community.

Body of Evidence: Seen and Heard is InclusiVibe Foundation's national patient-reported outcomes survey — documenting diagnostic delay, clinical bias, and care pathway experiences for people with complex neurological and hereditary connective tissue conditions. Conducted in partnership with Indiana University under IRB oversight.

This survey is for everyone. Whether your symptoms are mild or severe, whether you are newly diagnosed or still searching for answers, whether you are a caregiver or someone who has lost a loved one to a delayed or missed diagnosis — your experience is part of this record.

This is your community telling its own story, in a format that clinicians, institutions, and policymakers can act on.

The survey is coming soon.

Sign up to be notified when it opens — and to be part of the evidence.