One of the scariest and most lethal complications of VEDS is aortic rupture or dissection. We all know many tragic events; we also know some who have come through and lived to tell their stories.
To address the growing need for awareness of aortic disease and damage, EDNF is a founding member of Thoracic Aortic Disease Coalition. TAD is an alliance of like minded groups and individuals dedicated to changing the face of ER visits to positive outcomes for aortic patients.
The TAD Coalition launched its campaign on March 16, 2010; read the announcement here.
Those with EDS—Vascular EDS in particular—know all too well the pain and fear of any dissection, and how important it is to let others know.
TAD Coalition Founding Members
Ehlers-Danlos National Foundation
GenTAC (National Registry for Genetically Triggered Aortic Aneurysms and Cardiovascular Conditions)
International Registry of Acute Aortic Dissection (IRAD)
John Ritter Foundation for Aortic Health
Loeys-Dietz Syndrome Foundation
National Marfan Foundation
Nebraska Methodist Health System
Specialized Center of Clinically Oriented Research (SCCOR) on Thoracic Aortic Aneurysms and Dissections
Kim Eagle, MD
Luke Herman, MD
Loren Hiratzka, MD
Debra Kahle McMillan
Dianna Milewicz, MD, PhD
The American Heart Association and American College of Cardiology are partnering with the TAD Coalition to promote the new aortic disease diagnosis and treatment guidelines.
TAD has set up a website, will be presenting at various professional conferences, and will be adding new emergency room guidelines about Aortic Disease to ER admitting software.