The EDS Society has focused on genetics ... and I am so sorry to hear of your tough search. Another way of looking at the hEDS issues is to find working solutions that at least help. Try finding a physical therapist who has some understanding of our joint slippage and can give you information on how to keep the muscles surrounding the joints in place. Regenerative medicine doctors do prolotherapy that can tighten overworked and stretched ligaments connected to shipping joints. I am still looking for vein strengthening ideas. I have been taking billberry but don't think that is an answer. Any little bump into something solid causes blood brusing.
Hope you can find some working helps ....It matters!