I’m collecting links to Ehlers-Danlos Syndrome related research, including research into our many comorbidities, especially the most common two: MCAD and POTS. Please share any other research connections you’re aware of so we can help get funding for these great projects and inform each other about what’s already under way to save spoons and resources for all.
- Study on comorbidity of Atopic Diseases and Connective Tissue Disease – Josh Milner, MD NIH [Completed October 2016 as announced here]
- RCCX and Illness – Sharon Meglathery, MD, Karen Herbst, MD AZ – still seeking funding and a properly equipped lab with capable staff for the bench research needed
- A mouse model that may lead to treatment for Vascular EDS – Hal Dietz, MD Johns Hopkins
- HDCT research into Tenascin-X, Stickler and more – Nazli McDonell, MD NIH
It’s unclear to me if Dr. McDonell’s study above is still open or not – the original blog post that led me to it seems to think it’s ongoing, but the NIH page makes it seem closed. Updates welcome in the comments below or to me at firstname.lastname@example.org thanks.
Please email other research I should add to: email@example.com or share in the comments below.
Organizations also tracking and funding some research include:
- EDS Network C.A.R.E.S.
- The Murray-Wood Foundation
- The Ehlers-Danlos Society (The EDS, international scope successor to the EDNF)