Feedback Wanted

If you have five minutes to spare, we’d like to get your feedback on, to see what we’re doing right, and perhaps what we could be doing better!  Let us know your views by following the link below.

Researchers Feedback Survey – here

One thought on “Feedback Wanted

  1. When I was originally sent to he geneticist, my cardiothoracic surgeon & pulmonologist suspected Ehler’s Danlos III (JHS), because I had taken a bad face down fall and developed dysautonomia (hyperadrenergic POTS) which is my biggest problem. I have asked my geneticist and all my other doctors if there is a correlation between BHD and connective tissue disorders. Even my family members who do not have JHS, but are +BHD, have developed dysautonomia. Does anyone know??

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