CEDSA would love to find a cure for EDS. We have been actively advocating for research money from different sources and have gained ground in this area. Until these sources are secured, and funds are available, we will not discuss them publicly. This is to avoid confusion and not to build up premature hope.

Until we have time to list all the current Clinical Trials and other known research projects funded by other groups you may visit the following link for additional details. www.clinicaltrials.gov

FYI: CEDSA is the only EDS organization since 2014 registered with the US FDA to do research.

The type of research that will be conducted, the protocol in which places are chosen, and the persons/programs that will get research funded is directly dependent on the source of research funding. Many people who donate money for research or grants stipulate how, where, and who the money is given to and spent. When we announce research projects or clinical trials, all protocols for that specific project will be announced at the same time, when possible.

Here is a promise to the EDS community that we will make.

“Whenever funding is received specifically for research, it will be used in that manor. CEDSA will monitor the funding of the project to minimize any and all waste in the project. Research funding is not easy to come by and we will not allow it to be wasted in any way .“

Areas that CEDSA would like to see research projects started in:

Pain Control
Mast Cells Effect on EDS Children
Vitamin D Problems in Patients with EDS
Rickets in EDS
Cause for Bone Density Issues in EDS
The Cause for Crossover of Vascular EDS into Other EDS Types
Vision Problems in EDS
Sensory Issues with EDS Patients
ASD in EDS Patients
Processing Disorders in School Age Students with EDS

These are a few of the many areas where EDS research is needed, but we are not limited to just these topics. If you have questions, opportunities, or suggestions for research or clinical trials, we encourage you to contact CEDSA directly by calling us or emailing our board of directors at (989) 872-3372 or This email address is being protected from spambots. You need JavaScript enabled to view it.