EDS Specialists in Portland, Oregon: A Patient's Guide to Finding Care

· EDS Directory Editorial Team
eds portland oregon specialists directory
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Finding the right care for Ehlers-Danlos Syndrome in Portland takes knowing where to look — but the options are better than many patients realize. Portland has 53 listed EDS-knowledgeable providers, a major academic medical center with genetics, rheumatology, and vascular surgery expertise, and independent clinics built specifically around EDS care. This guide covers what is available and how to navigate it.

Browse EDS specialists in Portland →

A quick overview of EDS

Ehlers-Danlos Syndrome is a group of 13 inherited connective tissue disorders that affect collagen — the protein that holds together joints, skin, blood vessels, and organs. When collagen is faulty, the effects are body-wide: joints that dislocate or subluxate easily, chronic pain, fragile or stretchy skin, digestive dysfunction, fatigue, and in some subtypes, serious cardiovascular risks.

The most common form is hypermobile EDS (hEDS), accounting for 80–90% of cases. There is no genetic test for hEDS — diagnosis is clinical, based on the 2017 international criteria. There is no cure; treatment focuses on managing symptoms, protecting joints, and building a care team that understands the condition. The overall prevalence of EDS is estimated at roughly 1 in 5,000 people, though hEDS is likely underdiagnosed.

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 Portland

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 Portland:

Medical geneticists are often the first specialist to see for a formal diagnosis. They can identify your EDS subtype, order genetic testing (available for 12 of the 13 types), and rule out similar conditions. OHSU's Department of Molecular and Medical Genetics provides outpatient genetic evaluation and counseling for adults with known or suspected connective tissue disorders, including EDS. 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. Our directory lists 4 rheumatologists in the Portland area.

Physical therapists are the cornerstone of EDS management. 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. Our directory lists 8 physical therapists in Portland. See our detailed article on physical therapy and exercise for EDS.

Integrative and functional medicine providers are the largest category in our Portland listings, with 9 providers. Portland has a strong naturopathic medicine community, and several NDs in the area have developed specific expertise in EDS, POTS, and MCAS.

Mental health providers address the psychological toll of living with a chronic, often invisible condition. Our directory lists 6 mental health providers in Portland with EDS experience.

Vascular surgeons are essential for patients with suspected vascular EDS — the most serious subtype. OHSU has nationally recognized vascular surgery expertise relevant to connective tissue disorders.

Cardiologists monitor heart and vascular health, particularly for patients with POTS or those needing baseline echocardiograms. We cover the EDS-POTS connection in detail in EDS and POTS: What's the Connection?

You can browse all Portland providers by specialty in our directory.

Where to find EDS specialists in Portland

OHSU (Oregon Health & Science University)

OHSU is the most comprehensive academic medical center in Oregon and the most likely entry point for complex EDS care. While OHSU does not have a standalone EDS clinic, it offers relevant services through several departments:

OHSU Genetics Clinic (Marquam Hill). The Department of Molecular and Medical Genetics provides genetic evaluation and counseling for adults with suspected connective tissue disorders, including EDS. This is staffed by board-certified medical geneticists and genetic counselors. OHSU also has a specific referral pathway for Ehlers-Danlos Syndrome and offers a Connective Tissue Panel for laboratory testing.

OHSU Rheumatology (Marquam Hill). The Division of Arthritis and Rheumatic Diseases has faculty rheumatologists with experience in connective tissue disorders. For patients seeking a clinical diagnosis of hypermobile EDS, rheumatology is often the first specialty referral.

OHSU Comprehensive Pain Center (South Waterfront). Dr. Alena Guggenheim, a naturopathic doctor and Assistant Professor of Anesthesiology, specializes in the care of children and adults with chronic pain and joint hypermobility disorders. Her profile notes that she specifically enjoys working with EDS patients to help them navigate their healthcare options. Note that Dr. Guggenheim may not always be accepting new patients — check directly with the clinic.

OHSU Vascular Surgery. Dr. Sherene Shalhub is the Division Head of Vascular and Endovascular Surgery at OHSU and directs the Northwest Genetic Aortopathy and Arteriopathy Program (NW GAAP). She holds a joint appointment in the Department of Molecular and Medical Genetics and is the principal investigator for the Vascular EDS Collaborative Natural History Study. She is listed on the Ehlers-Danlos Society's website and ranks among MediFind's top vascular EDS specialists nationally. For patients with suspected vascular EDS, this is one of the strongest referral pathways in the Pacific Northwest.

Creative Thriving LLC

Based in Northeast Portland, Creative Thriving is a private practice founded by Tasha Searles, MSN, APRN, AGCNS-BC — an Advanced Practice Registered Nurse (Clinical Nurse Specialist) who brings both professional expertise and lived experience with complex chronic health conditions to her work. The practice offers:

  • In-person appointments in Northeast Portland and telehealth for patients throughout Oregon and Washington
  • Assessment for suspected EDS and hypermobility spectrum disorders, typically over 2–3 visits
  • Ongoing management of EDS and co-occurring conditions such as MCAS and POTS
  • A neurodiversity and LGBTQIA+-affirming approach
  • Self-pay and out-of-network billing; can bill CareOregon and Yamhill CCO Medicaid plans

For patients who need an EDS-focused provider outside the academic medical center system, Creative Thriving is one of the few practices in Oregon built specifically around this population.

NW Regen

Dr. Alicia Hart, a licensed naturopathic doctor at NW Regen, provides integrative care for EDS, POTS, and MCAS. Her approach combines conventional medicine with herbal, nutritional, and lifestyle strategies in a whole-body, trauma-informed framework. NW Regen has a dedicated EDS/POTS/MCAS service page, which is a strong indicator of genuine focus rather than passing familiarity.

Other Portland-area providers

Our directory lists 53 EDS-knowledgeable providers in Portland spanning 12 specialties. Beyond the providers highlighted above, the listings include physical therapy practices, acupuncture providers with specific hypermobility experience, massage therapists trained in working with connective tissue disorders, chiropractors, nutritionists, and primary care providers. You can browse all Portland providers on our Portland city page.

Telehealth options

For patients facing long wait times or needing care that is not available locally, telehealth can serve as a bridge. Creative Thriving LLC offers telehealth for Oregon and Washington residents. The Yellow Brick Clinic near Seattle — an EDS Society Center/Network of Excellence — also provides telehealth for Oregon patients, though their focus is pediatric (ages 2–25). Several national telehealth services focused on EDS are actively expanding their provider networks into Oregon.

Oregon EDS support organizations

Two related organizations serve the Oregon EDS community:

  • Oregon Area Ehlers-Danlos Society (OREDS) runs monthly support group meetings — primarily via Zoom — and maintains a community for EDS patients and families across the state.
  • Oregon Ehlers-Danlos Syndromes Advocates focuses on policy and insurance access, including campaigning for equal state benefits coverage for hypermobility spectrum disorders.

Both are affiliated with the national Ehlers-Danlos Society and are valuable sources of peer support and local provider recommendations.

What to look for in a provider

When evaluating a potential EDS provider in Portland, the same principles apply as anywhere:

  • Ask about the 2017 diagnostic criteria. The internationally accepted framework for EDS diagnosis is the 2017 International Classification. A provider unfamiliar with it may be working from outdated information.
  • Look for experience with related conditions. EDS frequently co-occurs with POTS, Mast Cell Activation Syndrome, Chiari malformation, and chronic fatigue. If a provider is surprised by these associations, they may lack EDS-specific experience.
  • Assess willingness to coordinate. EDS management works best when specialists communicate with each other rather than treating symptoms in isolation. A provider committed to a team approach is a strong sign.
  • Take dismissiveness seriously. Unfortunately, EDS symptoms are sometimes minimized or attributed to anxiety. A good provider takes your symptoms seriously and does not brush off hypermobility or chronic pain.
  • Verify directory listings. Providers listed in the Ehlers-Danlos Society directory or in our EDS Directory have actively identified themselves as EDS-knowledgeable.

Challenges in finding EDS care in Portland

Even in a city with the medical infrastructure of Portland, navigating EDS care comes with real obstacles.

No nearby EDS Center of Excellence. Portland does not currently have an Ehlers-Danlos Society Center of Excellence. The closest is the Yellow Brick Clinic in Renton, Washington — about 175 miles north — and it is pediatric-focused. For the most specialized multidisciplinary adult EDS care, patients may need to travel or rely on telehealth.

Long wait times. Specialists, especially geneticists, can have waitlists of several months to over a year. This is not unique to Portland — it reflects a nationwide shortage of EDS-knowledgeable providers.

Diagnostic delays. Research shows that people with rare diseases wait an average of nearly five years for a confirmed 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.

Limited insurance coverage. Some of the most knowledgeable EDS providers in Portland operate on a self-pay or out-of-network basis. Always verify coverage before scheduling. Oregon Medicaid does cover genetic testing for connective tissue disorders with documented medical necessity.

Provider awareness gaps. Most primary care providers receive little to no training on EDS during medical school. Patients often need to bring their own information and advocate strongly for themselves.

Tips for Portland patients

Start with your primary care doctor. Ask them to evaluate joint hypermobility using the Beighton Score and provide a referral to a geneticist or rheumatologist. Bring printed information from the Ehlers-Danlos Society website to your appointment. A PCP willing to learn about EDS can become a valuable care coordinator.

Apply to multiple providers at once. Given long wait times, reach out to several providers simultaneously rather than waiting for one response before contacting another. This is the single most practical thing you can do to speed up the process.

Use the directories. Our Oregon state page and the Ehlers-Danlos Society directory are the best starting points for finding vetted, EDS-knowledgeable providers.

Connect with Oregon's EDS community. OREDS and Oregon EDS Advocates offer peer support and provider recommendations from people who have been through the same process. Peer recommendations often identify providers who truly understand the condition.

Keep a symptom log. Track your joints, pain levels, fatigue, skin changes, and other symptoms over time. This helps providers see the full picture quickly and supports a faster, more accurate evaluation.

Consider telehealth as a bridge. While you wait for specialist appointments, services like Creative Thriving LLC can provide EDS-specific care remotely. Telehealth is especially valuable for patients outside the Portland metro area.

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.

When to seek care

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

Seek emergency care immediately if you experience sudden severe chest, abdominal, or back pain, signs of internal bleeding or rapidly expanding bruising, neurological symptoms such as sudden weakness or speech changes, or repeated fainting or loss of consciousness. These may signal vascular EDS or a serious cardiovascular event and require immediate medical attention — do not wait for a specialist appointment.

Getting started

Portland's EDS care landscape does not have a single front door, but the pieces are there. OHSU provides genetics, rheumatology, pain management, and nationally recognized vascular surgery in one academic system. Independent clinics like Creative Thriving LLC and NW Regen offer deeply specialized, patient-centered EDS care. Physical therapists, naturopathic doctors, and mental health providers with EDS experience round out the multidisciplinary team most patients need. And Oregon's EDS support organizations can help you find providers and navigate the system faster than going it alone.

Whether you are newly suspected, recently diagnosed, or have been managing EDS for years, quality care in Portland is within reach.

Browse EDS specialists in Portland →

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

Frequently asked questions

How many EDS specialists are in Portland, Oregon? There are currently 53 listed specialists spanning physical therapy, integrative medicine, rheumatology, mental health, massage and bodywork, and more.

Is there an EDS Center of Excellence near Portland? The closest is the Yellow Brick Clinic in Renton, Washington (near Seattle), about 175 miles north. It is a pediatric-focused practice serving ages 2–25. Portland does not currently have a designated Center of Excellence.

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. OHSU's Department of Molecular and Medical Genetics offers genetic evaluation for connective tissue disorders.

Does OHSU have a dedicated EDS program? Not a standalone clinic, but OHSU offers relevant services through genetics, rheumatology, the Comprehensive Pain Center, and vascular surgery. Dr. Sherene Shalhub's NW GAAP program is specifically focused on genetic aortopathy and arteriopathy, including vascular EDS.

Can I see an EDS specialist through telehealth in Oregon? Yes. Creative Thriving LLC offers telehealth for Oregon and Washington residents. Yellow Brick Clinic also offers telehealth for Oregon patients (pediatric focus). National telehealth services focused on EDS are expanding into Oregon as well.

Is there an EDS support group in Oregon? Yes. The Oregon Area Ehlers-Danlos Society runs monthly support meetings, and Oregon EDS Advocates focuses on policy and insurance access for the EDS community.

Sources

Published by the EDS Directory Editorial Team. Our content is researched using peer-reviewed medical literature and sources from the Ehlers-Danlos Society, NIH, and GeneReviews.