Ehlers-Danlos Syndrome (EDS) Algorithm and Resources for Primary Care

What to do when you suspect Ehlers-Danlos Syndrome – a practical guide for Primary Care Clinicians

Practical Guide:

What to do when you suspect Ehlers-Danlos Syndrome – a practical guide (Updated January 2022)

 

Checklist:

CHECKLIST- Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS):

This diagnostic checklist (fillable form PDF) / (printer friendly) is for doctors across all disciplines to be able to diagnose EDS (From Ehlers-Danlos Society)

 

Webinars:

TIME 4 GENETICS: What do you do when you suspect Ehlers-Danlos Syndrome: A Practical Guide, Dr. Abe Elias (CME Credit available for recording)

Virtual Education Series: EDS: More than Just Skin and Joints, Dr. Ellen Elias, Children’s Hospital Colorado

Baylor College of Medicine, Evening with Genetics: Advances in the care of people with Ehlers Danlos Syndrome, hypermobile type

 

Resources for Patients and Families:

Cardiovascular Autonomic Dysfunction in Ehlers-Danlos Syndrome — Hypermobile Type FOR NON-EXPERTS

Caring for Someone with EDS or HSD

Chronic Fatigue in Ehlers-Danlos Syndrome Hypermobile Type and Hypermobility Spectrum Disorder FOR NON-EXPERTS

EDS Registry

Educator’s/Parent’s Guide to School Success

Evidence-Based Rationale for Physical Therapy Treatment of Children, Adolescents, and Adults Diagnosed With Joint Hypermobility Syndrome/Hypermobile Ehlers-Danlos Syndrome FOR NON-EXPERTS

Gastrointestinal Involvement in the Ehlers-Danlos Syndromes FOR NON-EXPERTS

Genetics Education Materials for School Success (GEMSS)

Hypermobile Ehlers-Danlos Syndrome: Clinical Description and Natural History FOR NON-EXPERTS

Joint Hypermobility Informational Booklet

Mast Cell Disorders in Ehlers-Danlos Syndrome FOR NON-EXPERTS

Mental Health Care Toolbox for EDS and HSD

Neurological and Spinal Manifestations of the Ehlers-Danlos Syndromes FOR NON-EXPERTS

Oral and Mandibular Manifestations in the Ehlers-Danlos Syndromes FOR NON-EXPERTS

Pain Management in the Ehlers-Danlos Syndromes FOR NON-EXPERTS

Physical Therapy, Exercise and Braces for People with EDS or HSD

Psychiatric and Psychological Aspects in the Ehlers-Danlos Syndromes FOR NON-EXPERTS