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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 Rochester, NY. Of these, 10 are Experienced.

    Location
    LocationClose
    10 providers found
      Jane Liesveld
      Experienced in Koolen De Vries Syndrome
      Hematology | Oncology | Transplant Surgery
      Experienced in Koolen De Vries Syndrome
      Hematology | Oncology | Transplant Surgery

      University Of Rochester

      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English
      Offers Telehealth

      Jane Liesveld is a Hematologist and an Oncologist in Rochester, New York. Dr. Liesveld is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Acute Myeloid Leukemia (AML), Myelodysplastic Syndrome (MDS), Leukemia, Bone Marrow Transplant, and Bone Marrow Aspiration.

      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology
      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology
      383 Oxford St, Apt 1, 
      Rochester, NY 
       (1.2 miles away)
      Languages Spoken:
      English, Polish, Spanish

      Laura Vernon is a Pediatric Neurologist in Rochester, New York. Dr. Vernon is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Aicardi Syndrome, Corpus Callosum Agenesis, Focal or Multifocal Malformations in Neuronal Migration, and Periventricular Heterotopia.

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

      Sawgrass Surgery Center

      180 Sawgrass Drive, Suite 230, 2nd Floor, 
      Rochester, NY 
       (2.0 miles away)
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Robert Kornfield is a Gastroenterologist in Rochester, New York. Dr. Kornfield is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Gastroesophageal Reflux Disease (GERD), Trichohepatoenteric Syndrome, Diarrhea, and Nonalcoholic Steatohepatitis (NASH). Dr. Kornfield is currently accepting new patients.

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

      Pediatric Cardiology

      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English

      Matthew Egan is a Pediatric Cardiologist and a Pediatrics provider in Rochester, New York. Dr. Egan is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Ventricular Septal Defects, Patent Ductus Arteriosus, Bicuspid Aortic Valve, and Heart Murmurs.

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

      University Of Rochester Pediatric Ophthalmology Services

      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Experience:
      43+ years
      Languages Spoken:
      English

      Alex Levin is an Ophthalmologist in Rochester, New York. Dr. Levin has been practicing medicine for over 43 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Strabismus, Brown Syndrome, Familial Exudative Vitreoretinopathy, Cataract Removal, and Vitrectomy.

      Experienced in Koolen De Vries Syndrome
      Pulmonary Medicine | Intensive Care Medicine
      Experienced in Koolen De Vries Syndrome
      Pulmonary Medicine | Intensive Care Medicine

      Pulmonary Disease Clinical Group

      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English
      Offers Telehealth

      Robert Kottmann is a Pulmonary Medicine specialist and an Intensive Care Medicine provider in Rochester, New York. Dr. Kottmann is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Acute Interstitial Pneumonia, Pulmonary Fibrosis, Interstitial Lung Disease, Idiopathic Pulmonary Fibrosis, and Gastrostomy.

      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology
      601 Elmwood Ave, Box 629, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Stephanie Wong is a Pediatric Otolaryngologist in Rochester, New York. Dr. Wong is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Stridor, Laryngomalacia, Laryngeal Cleft, and Larynx Atresia. Dr. Wong is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Pediatric Pulmonology | Pediatrics
      Experienced in Koolen De Vries Syndrome
      Pediatric Pulmonology | Pediatrics
      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English

      Monica Vielkind is a Pediatric Pulmonologist and a Pediatrics provider in Rochester, New York. Dr. Vielkind is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Laryngomalacia, Tracheal Agenesis, Congenital Unilateral Pulmonary Hypoplasia, and Gastroesophageal Reflux in Infants.

      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology | Pediatrics | Nurse Practitioner
      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology | Pediatrics | Nurse Practitioner

      University Of Rochester

      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English
      Offers Telehealth

      Alexander Paciorkowski is a Pediatric Neurologist and a Pediatrics provider in Rochester, New York. Mr. Paciorkowski is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Spinocerebellar Ataxia Type 11, Spinocerebellar Ataxia Type 1, Spinocerebellar Ataxia Type 31, and Spinocerebellar Ataxia Type 17.

      Experienced in Koolen De Vries Syndrome
      Pediatric Endocrinology
      Experienced in Koolen De Vries Syndrome
      Pediatric Endocrinology
      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 miles away)
      Languages Spoken:
      English

      David Weber is a Pediatric Endocrinologist in Rochester, New York. Dr. Weber is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are X-Linked Hypophosphatemia, Juvenile Primary Osteoporosis, Zellweger Syndrome, and Osteomalacia.

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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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