EDS Specialists in New York: A Patient's Guide to Finding Care

If you are living with Ehlers-Danlos Syndrome in New York — or suspect you might be — the state offers more EDS resources than most. New York is home to two of the Ehlers-Danlos Society's designated Centers of Excellence, 69 listed specialists across 20 cities, and several institutions with dedicated EDS programs. Finding the right provider still takes effort, but the options here are real. This guide covers what is available and how to navigate it.

Browse EDS specialists in New York City →

A quick overview of EDS

Ehlers-Danlos Syndrome is a group of 13 inherited connective tissue disorders that affect collagen — the structural protein that holds together joints, skin, blood vessels, and organs. When collagen is faulty, the effects show up across the entire body: unstable joints, chronic pain, fragile skin, digestive dysfunction, cardiovascular issues, and fatigue.

The most common form is hypermobile EDS (hEDS), accounting for 80–90% of cases. Its hallmark features include joints that dislocate or subluxate easily, chronic widespread pain, skin that bruises easily, and frequent co-occurrence with conditions like POTS (a heart-rate disorder that causes dizziness on standing) and digestive problems. There is no cure for EDS — treatment focuses on managing symptoms, protecting joints, and building a care team that understands the condition.

We cover the condition in more detail in our articles on EDS treatment and management and what type of doctor treats EDS.

Types of EDS specialists in New York

Because EDS affects so many body systems, most patients need a multidisciplinary care team rather than a single doctor. Here are the types of providers commonly involved in EDS care, along with what is available in New York:

Medical geneticists are often the first specialist to see for a formal EDS diagnosis. They can identify your subtype, order genetic testing (available for 12 of the 13 types), and rule out similar conditions. New York has geneticists with EDS experience at institutions including Genetic Medicine of Westchester and Fairfield (Armonk) and Albany Medical College. For more on the testing process, see our article on genetic testing for EDS.

Rheumatologists specialize in joint and connective tissue conditions. For hypermobile EDS — where no genetic test exists — a knowledgeable rheumatologist can diagnose the condition clinically using the 2017 criteria. New York has rheumatologists with EDS experience at institutions like Weill Cornell Medicine and Hospital for Special Surgery. Our directory lists 6 rheumatologists in the state.

Physical therapists are the largest category of EDS providers in New York, with 27 listed in our directory. An EDS-aware PT designs safe strengthening programs focused on stabilizing joints rather than increasing flexibility — a critical distinction, since standard stretching protocols can make hypermobile joints worse. Physical therapy is widely considered the cornerstone of EDS management. See our detailed article on physical therapy and exercise for EDS.

Pain management specialists address the chronic pain that is often the most debilitating aspect of EDS. Manhattan Pain Medicine in New York City specifically manages hypermobile EDS alongside related conditions like POTS, MCAS, and small fiber neuropathy. Our directory lists 3 pain management specialists in the state.

Cardiologists are important for monitoring heart and blood vessel health, particularly for patients with POTS or those who need baseline echocardiograms. For patients with vascular EDS — the most serious subtype — cardiology involvement is urgent. We cover the EDS-POTS connection in detail in EDS and POTS: What's the Connection?

Neurologists and neurosurgeons manage EDS-related neurological complications, including Chiari malformation — a condition where brain tissue extends into the spinal canal. Weill Cornell Medicine's neurosurgery department has providers with specific EDS expertise.

Mental health providers are the second-largest category in our New York listings, with 14 providers. Living with a chronic, often invisible condition takes a real psychological toll. Some New York-based therapists who specialize in EDS also live with the condition themselves, which can provide a unique level of understanding.

Gastroenterologists help manage the digestive symptoms that are extremely common in EDS — including gastroparesis, reflux, motility disorders, and chronic nausea.

You can browse all New York providers by specialty in our directory.

Where to find EDS specialists in New York

EDS Society Centers of Excellence

New York has two of the Ehlers-Danlos Society's designated Centers of Excellence — clinics that have met rigorous standards for EDS care, research, and education. There are only a handful worldwide.

NYIT Ehlers-Danlos Syndrome / Hypermobility Treatment Center. Located at the New York Institute of Technology Academic Health Centers in Old Westbury (Long Island) and Central Islip, this center offers a true multidisciplinary team including primary care, cardiology, osteopathic manipulation, occupational therapy, and physical therapy — all focused specifically on EDS patients. They also host an annual Patient and Provider Symposium that brings together clinicians and the EDS community.

Mount Sinai South Nassau Chiari EDS Center. Located in Oceanside, NY, this center specializes in treating patients who have both EDS and Chiari malformation. The program offers comprehensive diagnostic evaluation and surgical treatment with a multidisciplinary team, and has published peer-reviewed research on craniocervical instability in EDS patients.

Other notable providers

Weill Cornell Medicine (New York City). The pain management division lists EDS as a distinct clinical focus, and their neurosurgery department at Och Spine at NewYork-Presbyterian has EDS-experienced providers offering comprehensive, integrated care. They have also published peer-reviewed research on chronic pain in EDS.

Manhattan Pain Medicine (New York City). A specialty pain practice where Dr. Nino Mikaberidze specifically manages hypermobile EDS alongside MCAS, POTS, and small fiber neuropathy. One of the few NYC practices that explicitly focuses on the full constellation of hEDS-related conditions.

Genetic Medicine of Westchester and Fairfield (Armonk, NY). Dr. Joy Samanich is a medical geneticist listed in the Ehlers-Danlos Society's provider directory who works with EDS patients for diagnosis, evaluation, and genetic testing. Located in Westchester County.

SUNY Upstate PM&R (Syracuse). For patients in upstate New York, SUNY Upstate's Physical Medicine and Rehabilitation department has faculty with EDS-focused clinical interests, including research on multidisciplinary management of hypermobile EDS.

Directories

For a searchable, up-to-date list of all New York EDS providers, visit our New York state page or the Ehlers-Danlos Society's Healthcare Professionals Directory.

What to look for in a provider

Not every doctor who treats joint pain will be experienced with EDS. When evaluating a potential provider:

• Ask about the 2017 diagnostic criteria. The internationally accepted framework for EDS diagnosis is the 2017 International Classification. A provider who is unfamiliar with it may be working from outdated information.
• Look for willingness to listen. A good EDS provider takes a detailed history, does not dismiss complex or overlapping symptoms, and validates your experience. Being heard matters enormously in EDS care.
• Check for related-condition awareness. Knowledgeable EDS doctors understand the conditions that frequently co-occur — POTS, Mast Cell Activation Syndrome, Chiari malformation, and chronic fatigue. If a provider is surprised by these associations, they may lack EDS-specific experience.
• Ask about their approach to coordination. EDS management works best when specialists communicate with each other rather than treating symptoms in isolation. A provider who is committed to a team approach is a strong sign.
• Verify their directory listing. Providers listed in the Ehlers-Danlos Society directory or affiliated with a Center of Excellence have actively engaged with EDS education and care.

Challenges in finding EDS care in New York

Even in a state with the medical resources of New York, finding EDS care is genuinely difficult.

Diagnostic delays remain the norm. On average, EDS patients wait over 10 years and see more than 15 doctors before receiving a correct diagnosis. A 2025 study found that 94.4% of hEDS patients were initially misdiagnosed, with many told their symptoms were psychological in origin. Common misdiagnoses include fibromyalgia, chronic fatigue syndrome, anxiety, and hypochondria.

Demand exceeds supply. Despite 69 listed providers across the state, waitlists for geneticists and dedicated EDS clinics can stretch months or longer. A national survey found that over half of EDS patients were willing to travel at least an hour to receive appropriate care — a telling indicator of how hard it is to find locally.

Many doctors have limited EDS training. Most primary care providers receive little to no education on EDS during medical school. Patients often need to bring their own information to appointments and advocate for themselves.

Insurance varies. Not all EDS-experienced providers accept every insurance plan. New York Medicaid does cover genetic testing for connective tissue disorders with documented medical necessity, but it is always worth confirming coverage before scheduling specialty appointments.

Tips for New York patients

Start with your primary care doctor. Ask them to evaluate your joint hypermobility using the Beighton Score and provide a referral to a geneticist or rheumatologist. A PCP who is willing to learn about EDS can become a valuable care coordinator.

Use the directories. Our New York state page and the Ehlers-Danlos Society directory are the best starting points for finding providers who have specifically identified themselves as EDS-knowledgeable.

Prepare thoroughly. Before specialist appointments, compile a symptom timeline, past diagnoses, test results, medications, and family medical history. EDS appointments are complex and time-limited — coming organized makes a significant difference.

Ask about telehealth. Some EDS specialists offer virtual consultations, which is especially valuable for patients outside the NYC metro area. New York Medicaid and most private insurers cover telehealth visits.

Connect with patient communities. Online and local support groups — on Reddit (r/ehlersdanlos), Facebook, and through the Ehlers-Danlos Society — are rich sources of provider recommendations from patients who have navigated the same system. These peer recommendations often identify providers who truly understand the condition.

Do not attribute every symptom to EDS. While EDS affects many body systems, new symptoms should always be evaluated on their own merits. A good provider will investigate new complaints rather than automatically filing them under EDS.

When to seek care

Reach out to a doctor if you or a family member experience frequent or unexplained joint dislocations, very stretchy or fragile skin, unexplained bruising or unusual scarring, fainting or dizziness when standing, chronic pain without a clear explanation, or a family history of EDS or similar connective tissue conditions.

Seek urgent care if there is any family history of unexplained aortic aneurysm, arterial rupture, or sudden death — these may be signs of vascular EDS, the most serious subtype, which requires immediate specialist evaluation.

Getting started

New York's healthcare landscape offers more EDS resources than most states — two Centers of Excellence, dozens of experienced providers, strong academic medical centers, and a growing telehealth infrastructure. The key is knowing where to look and being prepared to advocate for yourself. Whether you are newly suspected, recently diagnosed, or have been managing EDS for years, quality care in New York is within reach.

If you are looking for EDS specialists in New York City, you can browse providers by location and specialty here:

Browse EDS specialists in New York City →

You can also view all providers statewide on the New York state page or search the Ehlers-Danlos Society's Healthcare Professionals Directory.

Frequently asked questions

How many EDS specialists are in New York? There are currently 69 listed specialists across 20 cities, with the largest concentrations in Manhattan, Brooklyn, and Long Island.

What are the EDS Centers of Excellence in New York? The NYIT Ehlers-Danlos Syndrome / Hypermobility Treatment Center (Old Westbury and Central Islip) and the Mount Sinai South Nassau Chiari EDS Center (Oceanside).

What kind of doctor should I see first? Start with your primary care doctor for a referral. From there, a medical geneticist or rheumatologist is typically the first specialist for a formal diagnosis.

Does insurance cover EDS specialist visits? Most plans, including New York Medicaid, cover specialist visits and genetic testing with documented medical necessity. Always verify before scheduling.

Can I see an EDS specialist through telehealth? Yes. Many specialists offer telehealth, and New York Medicaid and most private insurers cover it. This is especially useful outside the NYC metro area.

What is the wait time to see an EDS specialist? It varies widely. Geneticist appointments can take months to over a year. Physical therapists and pain specialists may have shorter waits. Getting on waitlists early is recommended.

Sources

• Malfait F, et al. "The 2017 International Classification of the Ehlers-Danlos Syndromes." American Journal of Medical Genetics Part C, 2017.
• Lee C, Chopra P. "The Incidence of Misdiagnosis in Patients with Ehlers-Danlos Syndrome." Children (Basel), 2025; 12(6):698.
• Jones JT, et al. "Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome." Molecular Genetics & Genomic Medicine, 2022.
• The Ehlers-Danlos Society. Centers and Networks of Excellence.
• The Ehlers-Danlos Society. Healthcare Professionals Directory.