Related Research

I was collecting links to Ehlers-Danlos Syndrome related research here starting in 2019, including research into our many comorbidities.

But I just (February 2020) came across another resource who is doing a more automated job than I, so I’m going to point you there too:

Ehlers-Danlos Treatment Report (first seen in 2020 via the NYC EDS group).

I’m intending this page to be just for active current research to be clear. Findings/results end up on my home page under NEWS and on respective Resource pages. (With a couple big exceptions below.) Please apprise me of any others I’m missing. The good news is, research is slowly ramping up around the world finally.

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I also found the search page for studies of Connective Tissue Disease at the NIH too showing all results there, including closed trials. Via here.

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And, new in 2021: The Russell Norris Lab at the Medical University of South Carolina (MUSC) pivoted to studying the gene(s) for hEDS three years ago after doctoral student Cortney Gensemer (a post-doc now in 2024) shared her hEDS diagnosis with Dr. Norris (aka Chip). See their current EDS research here. And…

RESULT! June 2024: A Kallikrein gene has been found to possibly lie behind some cases of hEDS, June 2024! (Only a preprint yet, but still big news!) Research continues apace and we expect them to get peer-reviewed and properly published soon.

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And via TEDS December 2021: ““Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD): destructuring the fibroblast secretome to define bioactive molecules and disease mechanisms, and in vivo translational studies” has found some interesting results using doxycycline on hEDS fibroblasts in vitro. Dec 2021 And…

RESULT! September 2024: A fibronectin fragment was found in the blood of only hEDS and HSD patients, making it a potential biomarker for future diagnostic purposes, and suggesting a similar pathology.

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And, there are several bits of research being funded by the Ehlers-Danlos UK charity shown here.

Last updated 9/15/24

Organizations also tracking and or funding some research include:

• EDS Network C.A.R.E.S.
• EDS Awareness (aka Chronic Pain Partners) based in Ohio, USA
• The Murray-Wood Foundation
• The Ehlers-Danlos Society (The EDS, international scope successor to the EDNF) conducting HEDGE study and financing others
• Jess Has EDS (blog)