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

Finding EDS-aware care in Portland takes knowing where to look, but the options are better than many people realize. There's a strong academic medical center, a few dedicated independent clinics, an active naturopathic scene with EDS experience, and a local patient community that's generous with recommendations. This guide is a friendly walkthrough of where to look, who tends to help, and how to widen the search when you need to.

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Where to start your search

Most people end up with a small team of providers rather than one doctor who handles everything. The fastest way in is usually three places at once.

• Our directory lists Portland-area providers who have been flagged as EDS-aware, grouped by specialty.
• The Ehlers-Danlos Society's Healthcare Professionals Directory is the most widely trusted national list. Filter by Oregon and the specialty you want.
• Peer recommendations — especially through the Oregon Area Ehlers-Danlos Society — are often the fastest way to find providers who actually understand the condition.

Our directory currently lists 53 EDS-aware providers in Portland spanning 12 specialties. Integrative and functional medicine is the largest category in our Portland listings (reflecting Portland's strong naturopathic community), followed by physical therapy and mental health.

Browse all Oregon providers → · Browse directory categories →

Providers and programs worth knowing about

OHSU (Oregon Health & Science University)

OHSU is the most comprehensive academic medical center in Oregon and the most common entry point for complex EDS questions. There isn't a standalone EDS clinic, but several departments are relevant:

• OHSU Genetics Clinic (Marquam Hill). The Department of Molecular and Medical Genetics sees adults with suspected connective tissue disorders, including EDS, and has a specific referral pathway for EDS.
• OHSU Rheumatology (Marquam Hill). Faculty rheumatologists see patients with connective tissue conditions, and EDS is a common reason people are referred there.
• OHSU Comprehensive Pain Center (South Waterfront). Dr. Alena Guggenheim, ND, Assistant Professor of Anesthesiology, is known for working with EDS patients. Her profile notes she particularly enjoys helping EDS patients navigate their healthcare options. Availability varies — check with the clinic.
• OHSU Vascular Surgery. Dr. Sherene Shalhub leads Vascular and Endovascular Surgery at OHSU. She's listed on the Ehlers-Danlos Society's website and is a well-known Pacific Northwest referral path for patients who need a vascular surgeon familiar with EDS.

Creative Thriving LLC

Based in Northeast Portland and founded by Tasha Searles, MSN, APRN, AGCNS-BC — who brings both professional expertise and lived experience with complex chronic health conditions. The practice offers in-person visits in Northeast Portland and telehealth for Oregon and Washington. Self-pay and out-of-network billing, with the ability to bill CareOregon and Yamhill CCO Medicaid plans. Neurodiversity- and LGBTQIA+-affirming.

For anyone looking for an EDS-focused provider outside the academic medical center system, this is one of the few Oregon practices built specifically around this population.

NW Regen

Dr. Alicia Hart, a licensed naturopathic doctor at NW Regen, works with EDS patients and names EDS as a specific area of focus on the practice's website — usually a good sign of actual experience rather than passing familiarity.

Yellow Brick Clinic (telehealth)

About 175 miles north in Renton, Washington, Yellow Brick Clinic is an EDS Society Center/Network of Excellence and the closest designated Center to Portland. It's pediatric-focused (ages 2–25) and sees Oregon patients by telehealth.

Widening the search

If your first search comes up short, a few strategies help without turning the process into a full-time job.

• Telehealth. Creative Thriving LLC sees Oregon and Washington residents by video, and several national EDS-focused practices see Oregon patients. Can get things moving while you wait on an in-person spot.
• A different specialty. If a geneticist has a year-long waitlist, start with a rheumatologist, a physiatrist, or a PT. Not every step has to wait on one provider.
• Travel for the first visit. Some people plan a single comprehensive trip to a major EDS program — for example, Yellow Brick for pediatric cases — and carry out the plan with local providers afterward.
• Apply to more than one office at once. Instead of waiting for one office to reply before contacting the next, put in a handful of calls in the same week. This is the single most practical thing that speeds up the process.

The kinds of providers to look for

EDS care is usually spread across a small team. The categories that come up most often in people's search are:

• Geneticists and genetic counselors — OHSU is the main local path.
• Rheumatologists — our directory lists a handful in the Portland area.
• Physical therapists
• Integrative and naturopathic providers — a strength of the Portland scene, with several naturopaths who name EDS as a specific area of focus.
• Cardiologists
• Mental health providers who understand chronic illness.

You don't need them all at once. Start with one or two and add as you go. Your primary care doctor is often a good person to ask which direction to head first.

What to ask before you book

A short call before scheduling saves a lot of time. A few practical questions do most of the work:

• "Do you currently see patients with EDS?"
• "How familiar is your practice with EDS?"
• "Do you coordinate with other specialists, or do patients handle referrals themselves?"
• "Are you in-network for my insurance?"

That last one matters in Portland — some of the most EDS-focused providers operate self-pay or out-of-network, so confirming coverage before booking saves headaches later.

What to bring to the first visit

EDS appointments are complex and the clock moves fast. A little prep makes a big difference.

• A short, written summary of your current situation, past diagnoses, medications, and known allergies. Two or three pages, not a binder.
• A brief family history, if you think it may be helpful.
• One or two specific goals for the visit. "Find a PT recommendation" is more useful than "figure out my health."
• A support person if you can bring one.
• Any recent records that may be useful.

A few Portland-specific tips

Use both directories. Our Oregon listings and the Ehlers-Danlos Society directory catch slightly different providers, so both are worth a scan.

Connect with the Oregon EDS community. OREDS and Oregon EDS Advocates are two local organizations affiliated with the national Society. Peer referrals are often faster and more honest than any search engine.

Don't wait on one office. If you know you need several kinds of providers, put in calls to a few of them in the same week.

Expect to travel within the state — sometimes beyond. The closest Center of Excellence is in Washington. A few Oregon patients plan one trip north for a comprehensive visit and carry out the plan locally.

Getting started

Portland's EDS care landscape doesn't have a single front door, but the pieces are there — OHSU's academic system, independent clinics like Creative Thriving and NW Regen, Oregon's strong naturopathic community, and an active support network. Whether you're newly searching or have been at this for years, the right team is within reach.

Browse EDS providers in Portland → · All Oregon providers → · Ehlers-Danlos Society directory →

Sources

• The Ehlers-Danlos Society. Centers and Networks of Excellence.
• The Ehlers-Danlos Society. Healthcare Professionals Directory.
• OHSU. General Adult Genetics.
• OHSU. Sherene Shalhub, MD, MPH.
• OHSU. Alena Guggenheim, ND.
• Creative Thriving LLC. creativethrivingllc.com.
• NW Regen. EDS Services.
• Oregon Area Ehlers-Danlos Society. oreds.org.