About

An independent, open-source research index for the Ehlers-Danlos syndromes — built to answer a structural question: how do you honestly index what is known about a rare disease when the knowledge lives in journals, registries, forums, and four centuries of case notes at once?

Why this exists

EDS is under-researched relative to its burden, its diagnostic criteria have been revised three times in forty years, and the most common type had no associated gene until 2025. Patient communities have carried real signal — local-anesthetic resistance being the documented example — for years before formal study confirmed it. A serious index for this disease has to take all of that seriously without pretending a forum post is a clinical trial.

Editorial position

• Evidence is stratified, never flattened. Clinical, community, historical, registry, and gray-literature sources each carry their own tier ladder.
• Community material is indexed at venue level — patterns, never posters — and filed as reports, not proof.
• Historical and folk practices are documented as historical objects. Admission records existence and provenance, never efficacy.
• Uncertainty is publishable. Contested records are labeled contested; emerging records carry reassessment dates.
• Every record names its sources, its subtype scope, and the diagnostic era its evidence worked under.

What this is not

This index is not medical advice, does not diagnose, and does not recommend or discourage any course of care. If you believe you may have EDS, the index can show you what is known and where the evidence lives; it cannot tell you what you have or what to do.

Independence and source code

The index is published by Hraness as an independent editorial project. It is not affiliated with, endorsed by, or funded by The Ehlers-Danlos Society or any medical body — the society appears throughout the corpus because it operates the field's central research infrastructure. The full corpus and the code that validates and renders it are public at github.com/hraness/eds-research.

Contact and corrections

Corrections are a first-class input — see contact. The methodology is documented in full, and the research machinery is on the research program page.