Here is maybe an interesting link especially for US citizens to the Genetic And Rare Diseases Information Center in Gaithersburg, MD:
Livingwitheagle.org is also mentioned there.
Here in the forum I have not yet found any information about them. Has anyone already had experience with this organization?
Here in Europe there is the www.orpha.net . But until now they didn’t even have ES as a topic. I called them and they told me they would add it now.
I remember it mentioned a while back, but as I’m UK I didn’t look into it. Can’t remember if it’s something Ben’s Friends has been involved in…
Thank you for the link. I just emailed them as their description of symptoms, & especially of vascular ES is incomplete. I don’t know if they’ll add information from my comments as they may need research papers to back it up, but we have enough links on this forum to substantiate much of what I noted.
I did thank them for including a link to our forum for people who want to know more.