Parent Advisory Board

What we are?

The Parent Advisory Board was established to help drive the vision and provide advisement on current issues parents face with their child's EDS diagnosis. 

How to get involved

Please contact us at and in the subject line please put "Parent Advisory Board" or you can also message us on the Foundation Facebook page


Please see the attached document 

Parent Advisory Board Document
Attached please find more information about our plans.
CLF PAB Announcement .pdf
Adobe Acrobat Document 361.6 KB