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    Last Updated: 10/30/2025

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    MediFind found 10 doctor with experience in Koolen De Vries Syndrome near Madison, WI. Of these, 9 are Experienced and 1 are Advanced.

    Location
    LocationClose
    10 providers found
      Blaise A. Nemeth
      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Pediatrics | Orthopedics
      Experienced in Koolen De Vries Syndrome
      Pediatric Orthopedics | Pediatrics | Orthopedics

      University Of Wisconsin Medical Foundation Inc

      600 Highland Ave, 
      Madison, WI 
       (1.6 miles away)
      Languages Spoken:
      English
      Accepting New Patients

      Blaise Nemeth is a Pediatric Orthopedics specialist and a Pediatrics provider in Madison, Wisconsin. Dr. Nemeth is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Clubfoot, Caudal Regression Syndrome, Spondylocarpotarsal Synostosis Syndrome, Scoliosis, and Tenotomy. Dr. Nemeth is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Otolaryngology
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Otolaryngology
      600 Highland Ave, 
      Madison, WI 
       (1.6 miles away)
      Languages Spoken:
      English
      Accepting New Patients

      David Zopf is a Pediatric Otolaryngologist and an Otolaryngologist in Madison, Wisconsin. Dr. Zopf is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Microtia, Velopharyngeal Insufficiency, Laryngeal Cleft, Adenoidectomy, and Myringotomy. Dr. Zopf is currently accepting new patients.

      What does Elite, Distinguished, Advanced, Experienced mean?
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      University Of Wisconsin Medical Foundation Inc

      600 Highland Ave, 
      Madison, WI 
       (1.6 miles away)
      Languages Spoken:
      English

      Nicholas Burris is a Radiologist in Madison, Wisconsin. Dr. Burris is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Lung Nodules, Rhabdoid Tumor Predisposition Syndrome, Rhabdomyosarcoma, and Synovial Sarcoma.

      Learn about our expert tiers
      Experienced in Koolen De Vries Syndrome
      Radiology | Pediatric Radiology
      Experienced in Koolen De Vries Syndrome
      Radiology | Pediatric Radiology

      University Of Wisconsin Medical Foundation Inc

      600 Highland Ave, 
      Madison, WI 
       (1.6 miles away)
      Languages Spoken:
      English

      Kara Gill is a Radiologist and a Pediatric Radiologist in Madison, Wisconsin. Dr. Gill is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Scoliosis, Knock Knees, Symphalangism Distal, and Idiopathic Short Stature (ISS).

      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Otolaryngology | Pediatrics
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology | Otolaryngology | Pediatrics
      1675 Highland Ave, 
      Madison, WI 
       (1.7 miles away)
      Languages Spoken:
      English
      Accepting New Patients

      Ravindhra Elluru is a Pediatric Otolaryngologist and an Otolaryngologist in Madison, Wisconsin. Dr. Elluru is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Otitis, Enlarged Adenoids, Van Der Woude Syndrome, Myringotomy, and Adenoidectomy. Dr. Elluru is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics
      Experienced in Koolen De Vries Syndrome
      Medical Genetics | Pediatrics
      1500 Highland Ave, 
      Madison, WI 
       (1.7 miles away)
      Languages Spoken:
      English

      David Wargowski is a Medical Genetics specialist and a Pediatrics provider in Madison, Wisconsin. Dr. Wargowski is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Vascular Ehlers-Danlos Syndrome (VEDS), Brittle Cornea Syndrome, Musculocontractural Ehlers-Danlos Syndrome (mcEDS), and Ehlers-Danlos Syndrome (EDS).

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

      Dean Health Systems Inc

      1821 S Stoughton Rd, 
      Madison, WI 
       (4.6 miles away)
      Languages Spoken:
      English
      Offers Telehealth

      Roger Kulstad is an Endocrinologist in Madison, Wisconsin. Dr. Kulstad is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Thyroid Cancer, Anaplastic Thyroid Cancer, Hyperparathyroidism, and Familial Isolated Hyperparathyroidism.

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

      University Of Wisconsin Medical Foundation Inc

      2349 Deming Way, 
      Middleton, WI 
       (6.2 miles away)
      Languages Spoken:
      English
      Accepting New Patients

      Kimberly Stepien is an Ophthalmologist in Middleton, Wisconsin. Dr. Stepien is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Usher Syndrome, Choroideremia, Stargardt Macular Degeneration, and Retinitis Pigmentosa. Dr. Stepien is currently accepting new patients.

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

      University Of Wisconsin Medical Foundation Inc

      100 N Nine Mound Rd, 
      Verona, WI 
       (9.4 miles away)
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Edwin Abel is an Urologist in Verona, Wisconsin. Dr. Abel is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Renal Cell Carcinoma (RCC), Chromophobe Renal Cell Carcinoma, Ureterocele, Nephrectomy, and Reconstructive Urology Surgery. Dr. Abel is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner
      10 Tower Dr, 
      Sun Prairie, WI 
       (12.9 miles away)
      Languages Spoken:
      English
      Accepting New Patients

      Laura Pethan is a Nurse Practitioner in Sun Prairie, Wisconsin. Ms. Pethan is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Chronic Rhinosinusitis with Nasal Polyps (CRSwNP), Koolen De Vries Syndrome, Vascular Birthmark, and Idiopathic Short Stature (ISS). Ms. Pethan is currently accepting new patients.

      Showing 1-10 of 10

      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 near Madison, WI?

      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 near Madison, WI?

      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 near Madison, WI?

      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 near Madison, WI?

      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 near Madison, WI?

      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 near Madison, WI?

      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 near Madison, WI?

      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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