The Sullivan Group and The VEDS Movement Collaborate to Increase VEDS Awareness & Diagnosis

The Sullivan Group and The VEDS Movement, a division of The Marfan Foundation, have partnered to create a new e-learning educational activity designed to increase awareness and diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS) within the community of emergency physicians, nurses and advanced practice clinicians.

Because this condition is a rare form of Ehlers-Danlos Syndrome, healthcare professionals are often unaware of VEDS and its variety of life-threatening clinical presentations. This lack of familiarity frequently leads to delays and errors in the triage, evaluation, diagnosis and treatment of patients with VEDS and its complications.

It is estimated that there are about 6,000 people in the U.S. with VEDS, although many are undiagnosed. Many individuals with VEDS are not diagnosed until they have a life-threatening event, and 80% of VEDS patients will experience a major medical event by age 40. Too many are diagnosed during autopsy.

VEDS is a genetic disorder of connective tissue that renders an individual more prone to ruptured or dissected arteries (including the aorta), ruptured hollow organs (such as large bowel and the uterus during pregnancy), pneumothorax/hemothorax, and carotid-cavernous fistula. These complications can happen spontaneously or with minimal trauma and may occur in young adults and children.

Additionally, some common hospital procedures can be harmful to patients with VEDS. For example, automatic blood pressure cuffs in some patients may cause ruptured blood vessels. The bolus or rapid administration of IV fluids can also result in vascular rupture; therefore, certain types of invasive imaging and procedures should be avoided.

The e-learning educational activity will be available online to organizations that subscribe to The Sullivan Group’s Emergency Medicine CME Training library or for individual purchase at thesullivangroup.com. In addition to the increase in awareness via specialized online training, a portion of the revenue will be shared with The Marfan Foundation to help fund additional initiatives to expand its programs and services for the VEDS patient community.

About The Sullivan Group 
The Sullivan Group (TSG) has worked with over 1,000 acute care facilities; its educational activities have been used by 95,000 clinicians and has an impact on over 20 million patient visits annually. TSG’s RSQ® Solutions platform is used by some of the nation’s largest hospital systems to successfully reduce adverse outcomes.

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About The VEDS Movement 
The VEDS movement is dedicated to saving lives and improving the quality of life of individuals with Vascular Ehlers-Danlos Syndrome through research, patient support, education and awareness. Learn more and get involved at TheVEDSMovement.org

Healthcare professionals are often unaware of VEDS and its variety of life-threatening clinical presentations. This learning activity is designed to increase awareness and diagnosis of VEDS within the emergency medicine community.

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