One of the scariest and most lethal complications of VEDS is aortic rupture or dissection.
To address the growing need for awareness of aortic disease and damage, The Ehlers-Danlos Society, formally, 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.
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.
Thoracic Aortic Disease 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
- 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 a website, presents at professional conferences and has added new emergency room guidelines about Aortic Disease to ER admitting software. The coalition continues to develop new educational opportunities.