There does seem to be a bit of movement on the awareness front with ES, there have been research papers written, and I think some of the doctors are in contact/ are aware of each others work, here’s a couple of things which have been happening:
Here is the link to the webinar recorded with the top doctors researching this condition! (Venous Outflow) - General - Living with Eagle
I’m UK, so probably not the best one of us to reach out to Claudia, I don’t understand your insurance system for a start, it seems pretty complicated!
But it’s great that they want to help 