2019 EDS Society Global Learning Conference

Registration is open for the 2019 EDS Society Global Learning Conference.

You should go to one of these, once at least once, if you can. There is nothing like being in an auditorium full of people who are exactly like you. Empowering.

Scholarship application here.

It is also the largest gathering of people with the world’s most beautiful skin.

You get to hear the latest and greatest from the few doctors that care about us and the study us, which will help in your career as a patient. It validates your symptoms and your life experience. You will learn about better treatment to ask for.

I went to the 2017 conference in Las Vegas. I thought I knew everything about Ehlers-Danlos. I was blown away by how much more there is to know..

It was so good, I was sorry to miss the 2018 EDS Learning Conference in Baltimore, but my big project last summer was my attempt to complete a two mile ocean swim race. The race was scheduled just after the conference ended. I didn’t want to add jet lag to the challenge. Want to know if I succeeded? Read about it here: The Finish Line I Hoped to Cross.

2017 EDS Learning Conference

2017 EDS Learning Conference

More exciting news:

The Ehlers-Danlos Society announces worldwide research study to identify the genetic cause of hypermobile Ehlers-Danlos syndrome.

Recruitment has started for the genetic study of 1000 individuals with hEDS. Next event at the Global Learning Conference in Nashville, Tennessee, USA on July 30–August 1, 2019. Another great reason to attend, you can enroll in the study. But first join the EDS Society Global Registry.


There are already several research endeavors going on to locate the cause of hEDS. Someday soon, someone is going to find the problem. A suspicious gene will have to be validated on many patients before it will officially be the cause.

I will have a party when I get my cause found.