EDNF announces plans for EDS Registry, Research & Clinical Care Center
The EDNF announced that it will be forming an international research registry! We will be asked to donate blood and/or tissue samples to help in the effort.
In addition, plans are underway to found an EDNF Clinical Care and Research Center! The location of the proposed center has not been determined; several institutions are being considered. It would be a single location for EDSers to receive treatment by EDS experts in various specialties. This will be expensive, of course, so we are all encouraged to raise money and awareness for this endeavor. Please visit EDNF.org to donate.