Ehlers-Danlos syndrome

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6Active trials36Specialists8Treatment centers

Where are you in your journey?

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Also known as:

EDS
Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jun 2026The Ultrasound-Guided Dextrose Prolotherapy in Ehlers-Danlos Syndrome Patients

Tulane University — PHASE3

TrialNOT YET RECRUITING
Mar 2026STABLE Pilates for Hypermobility

Brigham and Women's Hospital — NA

TrialNOT YET RECRUITING
Feb 2026Clinical Assessment of Response in the Treatment of Depression With Daytime Sleepiness Using Solriamfetol

Axsome Therapeutics, Inc. — PHASE3

TrialRECRUITING
Sep 2025Impact of Ehlers-Danlos Syndrome on Gynaecological Health

University Hospital, Rouen

TrialNOT YET RECRUITING
Sep 2024Severe COVID-19 Infection in Children Presenting to EDs in Israel and England

Hadassah Medical Organization — NA

TrialRECRUITING
Mar 2023Does Self-Efficacy at the Start of Treatment Influence Treatment Outcome in Patients With EDs?

Altrecht

TrialRECRUITING
Nov 2022Light Exposure on Pain in Hypermobile Ehlers-Danlos Syndrome

New York Institute of Technology — NA

TrialRECRUITING
Nov 2022Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers

University of Calgary — PHASE4

TrialACTIVE NOT RECRUITING
Apr 2022Effect of Novel Exhalational Delivery System With Fluticasone (EDS-FLU) on Eustachian Tube Dysfunction (ETD)

Cedars-Sinai Medical Center — PHASE2

TrialRECRUITING
Jul 2019Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers

Vanderbilt University Medical Center — NA

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Ehlers-Danlos syndrome.

6 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

6 recruitingView all trials with filters →
Phase 41 trial
Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers
Phase 4
Active
PI: Satish R Raj, MD MSCI (University of Calgary) · Sites: Calgary, Alberta · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
N/A2 trials
Light Exposure on Pain in Hypermobile Ehlers-Danlos Syndrome
N/A
Actively Recruiting
PI: Philip Noto, DO (NYITCOM) · Sites: Old Westbury, New York · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers
N/A
Active
PI: Satish R Raj, MD MSCI (Vanderbilt University Medical Center) · Sites: Nashville, Tennessee · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Other2 trials
SEDVasc (RaDiCo Cohort) (RaDiCo-SEDVasc)
Active
PI: Xavier JEUNEMAITRE (INSERM UMR S970) · Sites: Angers; Bordeaux +15 more
View on ClinicalTrials.gov ↗I'm interested →
Registry of Ehlers-Danlos Syndrome
Actively Recruiting
PI: Luca Sangiorgi, MD, PhD, MS (Istituto Ortopedico Rizzoli) · Sites: Bologna, Emilia-Romagna
View on ClinicalTrials.gov ↗I'm interested →

Specialists

Showing 25 of 36View all specialists →
CM
Cyrille Bergoin, MD
Specialist
PI on 1 active trial
PP
Patrick MUCCI, Prof.
Specialist
PI on 1 active trial
PP
Patrick Mucci, Prof.
Specialist
PI on 1 active trial
CD
Cyrille BERGOIN, Dr.
Specialist
PI on 1 active trial
RP
Robert C Coghill, Ph.D.
Cincinnati, Ohio
Specialist

Rare Disease Specialist

SM
Shaine A Morris, MD, MPH
Houston, Texas
Specialist

Rare Disease Specialist

PI on 2 active trials
YD
Yves DAUVILLIERS
Specialist
PI on 2 active trials
MM
Michael Frank, MD
Specialist
PI on 1 active trial
AM
Amel Karaa, MD
BOSTON, MA
Specialist
PI on 3 active trials
SM
Satish R Raj, MD MSCI
Nashville, Tennessee
Specialist

Rare Disease Specialist

PI on 17 active trials
LM
Luca Sangiorgi, MD, PhD, MS
Specialist
PI on 3 active trials
XM
Xavier JEUNEMAITRE, MD,PHD
Specialist
PI on 1 active trial
RA
Raja Sivamani, MD MS AP
Sacramento, California
Specialist

Rare Disease Specialist

PI on 4 active trials
BP
Brendan Lee, MD, PhD
Specialist
PI on 4 active trials
AM
Andrea Maier
Aachen, North Rhine-Westphalia
Specialist

Rare Disease Specialist

PI on 1 active trial10 Ehlers-Danlos syndrome publications
DO
Diana L Driscoll, O.D.
Specialist
PI on 2 active trials
PD
Philip Noto, DO
OLD WESTBURY, NY
Specialist
PI on 1 active trial3 Ehlers-Danlos syndrome publications
MM
Malcolm Kohler, Prof. MD
Specialist
PI on 2 active trials
CM
Carlos Rafael Ramirez Paesano, MD
Specialist
PI on 1 active trial
SM
Stephen Freedman, MD
Specialist
PI on 4 active trials
AD
Andrea Maier, Dr.
Specialist
PI on 1 active trial
KP
Kathryn C Chatfield, MD, PhD
COLORADO SPRINGS, CO
Specialist
PI on 1 active trial
DP
Dmitry Rozenberg, MD, PhD
Specialist
PI on 1 active trial
AP
Amanda J Miller, Ph.D.
Specialist
PI on 1 active trial
RO
Richard A Driscoll, O.D.
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

Cincinnati Children's Hospital Medical Center

📍 Cincinnati, Ohio

⚗️ Trial Site

Vanderbilt University Medical Center

📍 Nashville, Tennessee

🏥 NORD

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

🔬 UDN

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to Ehlers-Danlos syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Ehlers-Danlos syndrome

1 articles
NewsCLINICALTRIALS.GOVFeb 5, 2026
New recruiting trial: Genetic Aortic Diseases and Cardiovascular Complications. An Observational Survey of Risk Factors.
The aim of this observational study is to define the behavioural and cardiovascular risk factor profiles of patients with genetic aortopathies. The main questio…
See all news about Ehlers-Danlos syndrome →

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 Ehlers-Danlos syndrome

Are there clinical trials for Ehlers-Danlos syndrome?

Yes — 6 recruiting clinical trials are currently listed for 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 Ehlers-Danlos syndrome?

25 specialists and care centers treating Ehlers-Danlos syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.