Overview | Ehlers-Danlos Syndromes (EDS)   

Ehlers-Danlos Syndromes are genetic disorders that can have a significant impact on patients and their families. Unfortunately, because few healthcare professionals are familiar with EDS, it can take years for a patient to get a proper diagnosis and treatment, even as their symptoms and disabilities get worse. PLEASE REGISTER BELOW for the EDSAwareness Nursing Continuing Education courses for nurses and other healthcare professionals.

The EDS Ehlers-Danlos Syndromes Nursing Education Program is the first set of online EDS courses for nurses and other healthcare professionals about the care of people who have Ehlers-Danlos Syndromes.

Patient survey
Patient survey

According to a patient poll on the EDS awareness website, most patients(53%) have had to wait over 20 years to get properly diagnosed with EDS. Since 2012, Chronic Pain Partners a 501 (c)(3) in association with EDS Awareness has been working to raise awareness about Ehlers-Danlos Syndromes in the community-at-large and among health professionals. They began providing free continuing medical education courses for physicians in 2017, building on their very successful monthly webinar series, which has over 90 recorded sessions. Now, EDS Awareness is expanding its reach by providing free ANCC-accredited continuing nursing education courses. Nursing is the largest healthcare profession, with over 3.6 million nurses in the US alone. Nurses spend more time with patients than many other health professionals, and they are experts in helping patients live with their health issues. By training nurses, EDS Awareness hopes that all patients with EDS will be able to find knowledgeable healthcare professionals who can help them get timely, safe, quality, compassionate care for their EDS-related issues.

An EDS Nursing Advisory Group has been formed as the first step in developing these courses. This group of experts, has developed the following goals for the first set of six courses:

 Recognize signs that a person may have EDS

 Assist patients and their families in navigating the healthcare system to get a diagnosis and appropriate treatment

 Advocate for patients with other members of the interdisciplinary healthcare team

 Empower patients and their family members to advocate for themselves
These first nursing courses were launched in Winter of 2019, with more courses to follow.






Introduction to Ehlers-Danlos Syndrome

The learner will increase their knowledge regarding the fundamental principles for the diagnosis and treatment of Ehlers-Danlos Syndromes and related disorders as well as associated conditions. In these courses, the fundamentals of EDS and related disorders will be discussed. The introductory program will enable the participant to better understand the multifactorial and complex nature of EDS and related disorders as well as increase understanding as to why these conditions are present with a diversity of symptoms which make diagnosis challenging. Since the severity of symptomatology and level of disability due to EDS and related disorders varies tremendously recognition can be difficult. Making the diagnosis and enacting a treatment plan is crucial as the morbidity and mortality when left untreated can be very significant. This program includes information for the care of patients from infancy through adulthood.

Nursing Continuing Education Curriculum Courses

Promoting Safe, Quality Healthcare for the Patient with EDS

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Advocacy & Navigation in the Care of Patients with EDS

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