The 20 Best Koolen De Vries Syndrome Doctors Near Me in Rochester, NY

Find the Top Koolen De Vries Syndrome Experts and Specialists

Last Updated: 04/28/2026

Save doctors for later
Sign Up
Not sure about your diagnosis?
Check Your Symptoms
Already have a doctor?
Find A Second Opinion

MediFind found 6 doctor with experience in Koolen De Vries Syndrome near Rochester, NY. Of these, 6 are Experienced.

Location
LocationClose
6 providers found
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    University Of Rochester

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

    Jane Liesveld is a Hematologist practicing medicine in Rochester, New York. Dr. Liesveld is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. She is also highly rated in 42 other conditions, according to our data. Her clinical expertise encompasses Acute Myeloid Leukemia (AML), Myelodysplastic Syndrome (MDS), Leukemia, Bone Marrow Transplant, and Bone Marrow Aspiration.

    Experienced in Koolen De Vries Syndrome
    Pediatric Pulmonology
    Experienced in Koolen De Vries Syndrome
    Pediatric Pulmonology

    Office

    601 Elmwood Ave Fl 6, 
    Rochester, NY 
     (0.4 miles away)
    Languages Spoken:
    English

    Monica Vielkind is a Pediatric Pulmonologist practicing medicine in Rochester, New York. Dr. Vielkind is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. She is also highly rated in 2 other conditions, according to our data. Her clinical expertise encompasses Laryngomalacia, Tracheal Agenesis, Congenital Unilateral Pulmonary Hypoplasia, and Gastroesophageal Reflux in Infants.

    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)
    Languages Spoken:
    English

    Alex Levin is an Ophthalmologist practicing medicine in Rochester, New York. Dr. Levin is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. He is also highly rated in 11 other conditions, according to our data. His clinical expertise encompasses Leber Congenital Amaurosis, Sorsby Fundus Dystrophy, Retinitis Pigmentosa, and X-Linked Retinitis Pigmentosa (XLRP).

    Learn about our expert tiers
    Experienced in Koolen De Vries Syndrome
    Pulmonary Medicine
    Experienced in Koolen De Vries Syndrome
    Pulmonary Medicine

    University Of Rochester

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

    Robert Kottmann is a Pulmonary Medicine provider practicing medicine in Rochester, New York. Dr. Kottmann is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. He is also highly rated in 9 other conditions, according to our data. His clinical expertise encompasses Pulmonary Fibrosis, Acute Interstitial Pneumonia, Interstitial Lung Disease, Idiopathic Pulmonary Fibrosis, and Gastrostomy.

    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 practicing medicine in Rochester, New York. Mr. Paciorkowski is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His clinical expertise encompasses Spinocerebellar Ataxia Type 31, Episodic Ataxia with Nystagmus, Spinocerebellar Ataxia Type 11, and Spinocerebellar Ataxia Type 7.

    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome
    2250 Brighton Henrietta Town Line Rd, 
    Rochester, NY 
     (5.1 miles away)
    Languages Spoken:
    English

    Nananamibia Duffy is a Dermatologist practicing medicine in Rochester, New York. Dr. Duffy is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. She is also highly rated in 1 other condition, according to our data. Her clinical expertise encompasses Actinic Keratosis, Warts, Psoriasis, and Basal Cell Skin Cancer.

    Showing 1-6 of 6

    Last Updated: 04/28/2026

    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 

    Read more about our Content Policy

    15 miles has been selected.