Overview
Hypermobile Ehlers-Danlos syndrome (hEDS), formerly known as Ehlers-Danlos syndrome hypermobility type or EDS type III, is the most common subtype of Ehlers-Danlos syndrome, a group of heritable connective tissue disorders. It is characterized by generalized joint hypermobility, joint instability with recurrent subluxations and dislocations, chronic musculoskeletal pain, and skin involvement that is typically softer and more extensible than normal but less fragile than in other EDS subtypes. Unlike most other forms of EDS, the genetic basis of hEDS has not yet been identified, and diagnosis relies on clinical criteria established in the 2017 international classification. The condition affects multiple body systems beyond the musculoskeletal system. Patients frequently experience chronic widespread pain, fatigue, and functional gastrointestinal disorders such as gastroesophageal reflux, dyspepsia, and irritable bowel-like symptoms. Cardiovascular manifestations may include mitral valve prolapse and orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS). Pelvic floor dysfunction, easy bruising, and anxiety disorders are also commonly reported. Many patients experience significant impairment in quality of life and daily functioning. There is currently no cure or disease-modifying therapy for hEDS. Management is multidisciplinary and focuses on symptom relief and prevention of complications. Physical therapy emphasizing joint stabilization and proprioceptive training is a cornerstone of treatment. Pain management may involve pharmacological and non-pharmacological approaches. Occupational therapy, bracing, and lifestyle modifications help maintain function. Associated conditions such as POTS, gastrointestinal symptoms, and psychological comorbidities are managed individually. Genetic counseling is recommended for affected families, though the specific gene(s) responsible remain unknown.
Also known as:
Clinical phenotype terms— hover any for plain English:
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
3 eventsUniversity Hospital Muenster — NA
Medical College of Wisconsin — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Hypermobile Ehlers-Danlos syndrome.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Hypermobile Ehlers-Danlos syndrome.
Community
No community posts yet. Be the first to share your experience with Hypermobile Ehlers-Danlos syndrome.
Start the conversation →Latest news about Hypermobile Ehlers-Danlos syndrome
Disease timeline:
New trial: Out of State - tAN hEDS
Phase NA trial recruiting. Transcutaneous Auricular Neurostimulation
New trial: TMD-specific Physiotherapy in hEDS Patients Individuals With Hypermobile Ehlers-Danlos Syndrome
Phase NA trial recruiting. Physiotherapy
New trial: Auricular Vagal Nerve Stimulation for Hypermobile Ehlers-Danlos Syndrome
Phase NA trial recruiting. Percutaneous vagal nerve stimulation (pVNS) device
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Common questions about Hypermobile Ehlers-Danlos syndrome
What is Hypermobile Ehlers-Danlos syndrome?
Hypermobile Ehlers-Danlos syndrome (hEDS), formerly known as Ehlers-Danlos syndrome hypermobility type or EDS type III, is the most common subtype of Ehlers-Danlos syndrome, a group of heritable connective tissue disorders. It is characterized by generalized joint hypermobility, joint instability with recurrent subluxations and dislocations, chronic musculoskeletal pain, and skin involvement that is typically softer and more extensible than normal but less fragile than in other EDS subtypes. Unlike most other forms of EDS, the genetic basis of hEDS has not yet been identified, and diagnosis re
How is Hypermobile Ehlers-Danlos syndrome inherited?
Hypermobile Ehlers-Danlos syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Hypermobile Ehlers-Danlos syndrome?
Yes — 3 recruiting clinical trials are currently listed for Hypermobile Ehlers-Danlos syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Hypermobile Ehlers-Danlos syndrome?
15 specialists and care centers treating Hypermobile Ehlers-Danlos syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.