Provider Education on Ehlers-Danlos Syndrome (EDS)

An open invitation to learn, grow, and transform outcomes for patients with complex connective tissue disorders.

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Why You’re Here Matters

EDS patients often spend years—sometimes decades—searching for a diagnosis. They are dismissed, misdiagnosed, or told their symptoms are “in their head.” Many experience preventable complications due to a lack of awareness in the medical community.

If you’re here, you’re already changing that.

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The Challenge of Diagnosing EDS

Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) are under-recognized, under-taught, and often misunderstood, even though they are not rare in many clinical settings.

Patients may present with:

• Generalized joint pain or instability

• Dysautonomia symptoms (e.g., fainting, POTS, tachycardia)

• GI motility disorders (e.g., IBS, gastroparesis)

• Chronic fatigue, sleep disorders, fibromyalgia diagnoses

• Mast cell-related symptoms (rashes, hives, food intolerances)

• Anxiety labeled but not explained by trauma or mood disorders

• A long history of non-specific, systemic complaints with normal labs

Early recognition and trauma-informed, coordinated care improve outcomes, reduce costs, and restore trust in the healthcare system.

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The Ehlers-Danlos Society’s ECHO Program: Learn from Global Experts

Project ECHO: EDS and HSD for Medical Professionals

The Ehlers-Danlos Society runs a free, case-based, tele-mentoring series using the globally respected Project ECHO model.

This program is ideal for:

• Physicians (MDs, DOs)

• Nurse Practitioners and Physician Assistants

• Physical Therapists

• Psychologists and Mental Health Providers

• Genetic Counselors

• Any licensed provider who wants to understand EDS/HSD in depth

What You’ll Gain:

• Monthly virtual learning sessions led by multidisciplinary EDS experts

• Evidence-based clinical education on diagnostic criteria, comorbidities, and management

• Case consultations with specialists and other ECHO participants

• Access to an international community of like-minded providers

Registration and details here:
👉 https://www.ehlers-danlos.com/echo/

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Provider-Focused Resources to Expand Your Knowledge

• 2026 REVISED International Classification and Diagnostic Criteria for EDS & HSD (Coming Soon)

• EDS Diagnostic Checklist for Providers
  https://www.ehlers-danlos.com/eds-diagnostic-checklist/

• Provider Directory 
  https://www.ehlers-danlos.com/healthcare-professionals/

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Ways You Can Help Close the Care Gap

Be C.L.E.A.R. with your patients.

• Start asking about joint hypermobility in your history and physical exam

• Validate symptoms even when diagnostic tests are inconclusive

• Refer to multidisciplinary care teams (PT, neurology, GI, psychology, immunology)

• Collaborate with genetic counselors and patient advocates

• Learn to recognize subtypes like vascular EDS (vEDS), which can be life-threatening

Join a Global Movement of Change

EDS Joint Effort is proud to support healthcare professionals who are ready to step up for this often-overlooked population. Whether you’re a primary care provider, therapist, or specialist, your willingness to listen, learn, and lead can change a life.

When you understand EDS, you don’t just improve outcomes. You build trust. You reduce harm. You empower people who’ve been dismissed for far too long.