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    Last Updated: 10/30/2025

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    MediFind found 44 doctor with experience in Koolen De Vries Syndrome near Oregon, US. Of these, 39 are Experienced and 5 are Advanced.

    Location
    LocationClose
    44 providers found
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome
      1805 East 19th Street, 
      The Dalles, OR 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Gary Gingrich is an Urologist in The Dalles, Oregon. Dr. Gingrich is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Familial Prostate Cancer, Urinary Incontinence, Perirenal Abscess, Boils, and Ureteroscopy. Dr. Gingrich is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Cardiology | Pediatrics
      Experienced in Koolen De Vries Syndrome
      Cardiology | Pediatrics
      9427 Southwest Barnes Road, Suite 598, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Marc Legras is a Cardiologist and a Pediatrics provider in Portland, Oregon. Dr. Legras is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Heart Murmurs, Wolff-Parkinson-White Syndrome, Ventricular Septal Defects, Orthostatic Hypotension, and Patent Foramen Ovale Repair. Dr. Legras is currently accepting new patients.

      What does Elite, Distinguished, Advanced, Experienced mean?
      Advanced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics
      Advanced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics
      2801 N Gantenbein Ave Ste 2225, 
      Portland, OR 
      Languages Spoken:
      English

      Andrea Petersen is a Medical Genetics specialist and a Pediatrics provider in Portland, Oregon. Dr. Petersen is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Trichorhinophalangeal Syndrome Type 2, Cardiomyopathy Hypogonadism Metabolic Anomalies, Nijmegen Breakage Syndrome, and Bosma Arhinia Microphthalmia Syndrome.

      Learn about our expert tiers
      Advanced in Koolen De Vries Syndrome
      Ophthalmology
      Advanced in Koolen De Vries Syndrome
      Ophthalmology

      University Professional Services

      3303 S Bond Ave, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Paul Yang is an Ophthalmologist in Portland, Oregon. Dr. Yang is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are X-Linked Retinitis Pigmentosa (XLRP), Retinitis Pigmentosa, Cone-Rod Dystrophy, and Usher Syndrome Type 2A. Dr. Yang is currently accepting new patients.

      Advanced in Koolen De Vries Syndrome
      Ophthalmology
      Advanced in Koolen De Vries Syndrome
      Ophthalmology

      University Professional Services

      15700 Sw Greystone Ct, 
      Beaverton, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Mark Pennesi is an Ophthalmologist in Beaverton, Oregon. Dr. Pennesi is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Retinopathy Pigmentary Mental Retardation, Retinitis Pigmentosa, Usher Syndrome, Late-Onset Retinal Degeneration, and Vitrectomy. Dr. Pennesi is currently accepting new patients.

      Advanced in Koolen De Vries Syndrome
      Radiology | Pediatric Radiology
      Advanced in Koolen De Vries Syndrome
      Radiology | Pediatric Radiology

      University Professional Services

      3181 Sw Sam Jackson Park Rd, 
      Portland, OR 
      Languages Spoken:
      English

      Andrew Phelps is a Radiologist and a Pediatric Radiologist in Portland, Oregon. Dr. Phelps is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Scoliosis, Osteopoikilosis, Kyphomelic Dysplasia, and Cartilage-Hair Hypoplasia.

      Advanced in Koolen De Vries Syndrome
      Advanced in Koolen De Vries Syndrome
      3101 Sw Sam Jackson Park Road, 
      Portland, OR 
      Languages Spoken:
      English, Spanish
      Accepting New Patients

      Michelle Welborn is an Orthopedics provider in Portland, Oregon. Dr. Welborn is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Scoliosis, Kyphosis, Collins Pope Syndrome, Osteotomy, and Spinal Fusion. Dr. Welborn is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Endocrinology
      Experienced in Koolen De Vries Syndrome
      Endocrinology

      University Professional Services

      3181 Sw Sam Jackson Park Rd, 
      Portland, OR 
      Languages Spoken:
      English
      Offers Telehealth

      Eric Orwoll is an Endocrinologist in Portland, Oregon. Dr. Orwoll is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Osteoporosis, Osteogenesis Imperfecta, Postmenopausal Osteoporosis, Fractured Spine, and Hormone Replacement Therapy (HRT).

      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      University Professional Services

      3311 Riverbend Dr, Suite 300, 
      Springfield, OR 
      Languages Spoken:
      English, French, Italian, Spanish
      Accepting New Patients

      Craig Broberg is a Cardiologist in Springfield, Oregon. Dr. Broberg is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Congenital Heart Disease (CHD), Tetralogy of Fallot, Eisenmenger Syndrome, Heart Transplant, and Heart Valve Repair. Dr. Broberg is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics
      Experienced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics

      Legacy Good Samaritan Hospital And Medical Center

      1130 Nw 22nd Ave, Suite 630, 
      Portland, OR 
      Languages Spoken:
      English, Greek
      Accepting New Patients

      George Anadiotis is a Medical Genetics specialist and a Pediatrics provider in Portland, Oregon. Dr. Anadiotis is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Miller-Dieker Syndrome, Smith-Magenis Syndrome, Autism Spectrum Disorder, and Chromosome 2 Uniparental Disomy. Dr. Anadiotis is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome
      3101 S. W. Sam Jackson Park Rd., 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Robert Bernstein is an Orthopedics provider in Portland, Oregon. Dr. Bernstein is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Singleton-Merten Syndrome, Greenberg Dysplasia, Myhre Syndrome, and Multicentric Carpotarsal Osteolysis Syndrome. Dr. Bernstein is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Pediatrics | Otolaryngology
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Pediatrics | Otolaryngology
      3181 Sw Sam Jackson Park Rd, 
      Portland, OR 
      Languages Spoken:
      English

      Brooke Su-Velez is a Pediatric Otolaryngologist and a Pediatrics provider in Portland, Oregon. Dr. Su-Velez is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Pierre Robin Sequence, Deafness Craniofacial Syndrome, Multiple Epiphyseal Dysplasia, Thyroidectomy, and Parathyroidectomy.

      Experienced in Koolen De Vries Syndrome
      Orthopedics | Pediatric Orthopedics
      Experienced in Koolen De Vries Syndrome
      Orthopedics | Pediatric Orthopedics
      9135 Southwest Barnes Road, Suite 763, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Heather Kong is a Pediatric Orthopedics specialist and an Orthopedics provider in Portland, Oregon. Dr. Kong is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Clubfoot, Beukes Familial Hip Dysplasia, Knock Knees, and Meningococcemia. Dr. Kong is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Plastic Surgery
      Experienced in Koolen De Vries Syndrome
      Plastic Surgery

      Legacy Emanuel Hospital And Health Center

      501 N Graham St, Suite 300, 
      Portland, OR 
      Languages Spoken:
      English
      Offers Telehealth

      Christopher Zarella is a Plastic Surgeon in Portland, Oregon. Dr. Zarella is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Metopic Ridge, Craniosynostosis, Orofaciodigital Syndrome 1, and Goldenhar Disease.

      Experienced in Koolen De Vries Syndrome
      Medical Genetics
      Experienced in Koolen De Vries Syndrome
      Medical Genetics

      Legacy Good Samaritan Hospital And Medical Center

      1040 Nw 22nd Ave, Suite 30, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Dana Simpson is a Medical Genetics provider in Portland, Oregon. Dr. Simpson is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Incontinentia Pigmenti, Increased Head Circumference, Miller-Dieker Syndrome, and Smith-Magenis Syndrome. Dr. Simpson is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Orthopedics
      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Orthopedics
      3101 Sw Sam Jackson Park Rd, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Daniel Bouton is a Pediatric Orthopedics specialist and an Orthopedics provider in Portland, Oregon. Dr. Bouton is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Scoliosis, Spondylocarpotarsal Synostosis Syndrome, Caudal Regression Syndrome, Kyphosis, and Spinal Fusion. Dr. Bouton is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Orthopedics
      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Orthopedics
      3101 Sw Sam Jackson Park Rd, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Ellen Raney is a Pediatric Orthopedics specialist and an Orthopedics provider in Portland, Oregon. Dr. Raney is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Arthrogryposis Multiplex Congenita, Congenital Contractures, Clubfoot, Osteogenesis Imperfecta, and Osteotomy. Dr. Raney is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Orthopedics | Pediatric Orthopedics
      Experienced in Koolen De Vries Syndrome
      Orthopedics | Pediatric Orthopedics
      9135 Southwest Barnes Road, Suite 763, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Ahmad Bayomy is a Pediatric Orthopedics specialist and an Orthopedics provider in Portland, Oregon. Dr. Bayomy is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Knock Knees, Osgood-Schlatter Disease, Osteochondritis Dissecans, and Beukes Familial Hip Dysplasia. Dr. Bayomy is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome
      501 N Graham St, Ste 200, 
      Portland, OR 
      Languages Spoken:
      English
      Accepting New Patients

      Rebecca Clinton is an Orthopedics provider in Portland, Oregon. Dr. Clinton is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Clubfoot, Claw Foot, Beukes Familial Hip Dysplasia, and Macrodactyly of the Foot. Dr. Clinton is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Surgery | General Surgery
      Experienced in Koolen De Vries Syndrome
      Pediatric Surgery | General Surgery
      3181 SW Sam Jackson Park Rd L579, 
      Portland, OR 
      Languages Spoken:
      English

      Minna Wieck is a Pediatric Surgeon and a General Surgeon in Portland, Oregon. Dr. Wieck is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Total Intestinal Aganglionosis, Hirschsprung Disease, Pectus Carinatum, Ileostomy, and Appendectomy.

      Showing 1-20 of 44

      Last Updated: 10/30/2025

      What is the definition of Koolen De Vries Syndrome?

      Koolen de Vries syndrome is a disorder characterized by developmental delay, mild to moderate intellectual disability, congenital malformations, and behavioral features. Other problems include weak muscle tone (hypotonia) in childhood, recurrent seizures (epilepsy), and distinctive facial features. Males with Koolen de Vries syndrome often have undescended testes (cryptorchidism). Other symptoms may include defects in the walls between the chambers of the heart (septal defects) or other heart defects, kidney problems, and skeletal anomalies such as foot deformities. It is caused by genetic changes in the KANSL1 gene, or by the loss of a small amount of genetic material in chromosome 17 that includes the KANSL1 gene (chromosome 17 q21.31 microdeletion). Inheritance is autosomal dominant.

      When should I see a Koolen De Vries Syndrome doctor in Oregon, US?

      There are various reasons why you may want to see a specialist, such as: 

      • Your primary care provider recommends it. 
      • Your condition requires expert knowledge and specialized care. 
      • Your symptoms persist or worsen despite treatment. 
      • You need specialized testing or procedures. 
      • You want a second opinion.  

      What should I consider when choosing a Koolen De Vries Syndrome doctor in Oregon, US?

      It’s important to see a provider with expertise in your specific condition. Each provider profile in MediFind’s doctor database includes information on which conditions they treat, years of experience, research contributions, languages spoken, insurance plans accepted, and more.  

      How does MediFind rank Koolen De Vries Syndrome doctors in Oregon, US?

      MediFind’s rankings are based on a variety of data sources, such as the number of articles a doctor has published in medical journals, participation in clinical trials and industry conferences, as well as the number of patients that provider sees for a given condition. Note that MediFind’s provider database is not based on user reviews, and providers do not pay to be included in the database. 

      What types of insurance are accepted by Koolen De Vries Syndrome doctors in Oregon, US?

      Most profiles in MediFind’s doctor database include a list of insurance plans accepted by that provider. However, it’s a good idea to contact the provider’s office to make sure they still accept your insurance, then doublecheck by contacting your insurance plan to confirm they’re in network. 

      How can I book an appointment online with a Koolen De Vries Syndrome doctor in Oregon, US?

      MediFind offers direct scheduling for certain providers using the “Request Appointment” button on that provider’s profile. If the schedule option is not available for a provider, tap the red “Show Phone Number” button on their profile to get their contact information. If you prefer to find providers who offer online scheduling, select “Schedules online” under the “Availability” category of the filter feature on the left side of the Koolen De Vries Syndrome doctor search results page. 

      Why is it important to get a second opinion from a different Koolen De Vries Syndrome doctor?

      Second opinions are an opportunity to confirm a diagnosis and its root cause, learn about alternative treatment options, or simply gain peace of mind. Many people, especially those with serious diagnoses, get second opinions so they can understand all their options and make informed decisions, so don’t hesitate to get one if you have any doubts or need more information or clarification regarding your care. Note that some insurance plans require second opinions, while others don’t cover second opinions, so be sure to confirm with your insurance provider first.   

      How can I prepare for my appointment with a Koolen De Vries Syndrome doctor in Oregon, US?

      Prepare for your appointment by gathering the following items: 

      • Copies of medical records (dating back at least one year) 
      • Your medical history, including illnesses, medical conditions, surgeries, and other doctors you see 
      • Family history of disease 
      • List of current prescription drugs, over-the-counter medicines, vitamins, and herbal remedies or supplements including names and doses 
      • Allergies to medications, food, latex, insects, etc.  
      • List of questions and concerns 
      • Your insurance card 

      You might also contact the provider’s office to see if they offer transportation or childcare services or if you’re allowed to bring a loved one for support or to take notes during your visit. 

      What questions should I ask my Koolen De Vries Syndrome doctor?

      Here are some sample questions: 

      • Can you explain in simple terms what this condition is and how it’s treated? 
      • What symptoms or side effects should I watch for? 
      • What tests will be involved, and when can I expect results? 
      • Are there other specialists I need to see? 
      • What’s the best way to reach you if I have follow-up questions? 

      How can I learn about the latest clinical trials and research advances my Koolen De Vries Syndrome doctor may know about?

      MediFind’s Clinical Trials tool asks you a series of questions to help you narrow down your search by health condition, age, gender, location, how far you’re willing to travel, and more. Each question you answer filters down the number of trials until you find the ones that are most relevant to you. 

      MediFind’s Latest Advances tool features summaries of recent articles published in medical journals. We use cutting-edge technology to scour medical publication databases for the latest research advancements on any given condition, then we simplify this information in a way that’s useful and easy to understand. 

      Can I filter my search to show male or female Koolen De Vries Syndrome doctors in Oregon, US?

      Look for the filter feature on the left side of the Koolen De Vries Syndrome doctor search results page. Select “Female” or “Male” under the “Gender” category to search for female or male providers exclusively. If the “Any” option is selected, it will pull results for both male and female providers. 

      Can I filter my search to find a Koolen De Vries Syndrome doctor that offers video calls?

      Look for the filter feature on the left-side of the Koolen De Vries Syndrome doctor search results page. Select “Offers telehealth visits” under the Availability category to search for providers who offer virtual appointments (video calls). 

      Reviewed on: 11/11/24  

      By: MediFind Medical Staff 

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