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 better (more automated) job than I, so I’m going to point you all there now:
Ehlers-Danlos Treatment Report (first seen in 2020 via the NYC EDS group).
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.
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 a doctoral student shared her EDS diagnosis with Dr. Norris (aka Chip). They are actively soliciting DNA samples from anyone who has been diagnosed with hEDS or suspected hEDS to help potentially find more mutations and genes involved. (They feel strongly as I do that there will be multiple found in time.) Email them at: EDSRegistry@musc.edu for more information and to get involved.
Last updated 7/20/21.
Organizations also tracking and 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) who are conducting the HEDGE study to also try to find the hEDS gene or genes.