Background and Rationale

InclusiVibe Foundation exists because the evidence demands it.

The diagnostic experiences of people with complex connective tissue and neurocomplex conditions are not anecdotal. They are documented, peer-reviewed, and reproducible across international datasets.

This page presents that evidence — the research that grounds our programs, informs our advocacy, and makes the case that what this community has lived is documented, consistent, and not a matter of individual misfortune.

The scale of diagnostic delay

A 2025 global survey of 3,906 participants with hEDS and HSD found an average diagnostic delay of 22.1 years between symptom onset and confirmed diagnosis. Participants received their diagnosis at an average age of 31.4 years, meaning symptoms began in childhood or early adolescence for the majority and remained unresolved for over two decades.

1. Daylor V, Griggs M, Weintraub A, et al. Defining the chronic complexities of hEDS and HSD: a global survey of diagnostic challenges, life-long comorbidities, and unmet needs. J Clin Med. 2025;14(16):5636. doi:10.3390/jcm14165636

A 2023 study of 505 clinically confirmed hEDS patients found an average of 10.45 alternative diagnoses received prior to correct diagnosis. Diagnoses most frequently rejected as inaccurate: functional neurological disorder, multiple sclerosis, and fibromyalgia. Average time to correct diagnosis: 10.39 years.

2. Halverson CME, Cao S, Perkins SM, Francomano CA. Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos Syndrome. Genetics in Medicine Open. 2023;1:100812. doi:10.1016/j.gimo.2023.100812

For context across the rare disease landscape: a 2009 survey of 12,000 patients by EURORDIS found an average diagnostic delay of 14 years across rare conditions. The hEDS population significantly exceeds this already-alarming baseline.

3. EURORDIS — Rare Diseases Europe. Voice of 12,000 Patients: Experiences and Expectations of Rare Disease Patients on Diagnosis and Research. 2009.

Psychiatric misattribution and its consequences

A 2025 retrospective chart review of 429 hEDS patients found that 94.4% had received an incorrect psychiatric diagnosis from a non-psychiatrist before receiving their hEDS diagnosis. 88% reported that providers told them their symptoms were fabricated or exaggerated.[4]

This pattern — psychiatric attribution before structural investigation — is what InclusiVibe Foundation was founded to document. Preliminary peer-reviewed evidence and consistent reports from our patient community suggest it is not an isolated clinical error. The Body of Evidence Survey is designed to generate the longitudinal, multi-system data needed to characterize the full scope of this pattern and its consequences.

Reference:

4. Lee C, Chopra P. The incidence of misdiagnosis in patients with Ehlers-Danlos Syndrome. Children (Basel). 2025;12(6):698. doi:10.3390/children12060698

For donations, collaboration inquiries, & sponsorships: