The 20 Best Koolen De Vries Syndrome Doctors Near Me in North Carolina, US

Find the Top Koolen De Vries Syndrome Experts and Specialists

Last Updated: 04/28/2026

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MediFind found 66 doctor with experience in Koolen De Vries Syndrome near North Carolina, US. Of these, 59 are Experienced, 6 are Advanced and 1 are Distinguished.

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66 providers found
    Donald J. Weaver
    Experienced in Koolen De Vries Syndrome
    Pediatric Nephrology
    Experienced in Koolen De Vries Syndrome
    Pediatric Nephrology

    Atrium Health Levine Children's Nephrology

    1001 Blythe Blvd., Suite C, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Donald Weaver is a Pediatric Nephrologist in Charlotte, North Carolina. Dr. Weaver is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Posterior Urethral Valves, Togaviridae Disease, Feingold Syndrome, and Congenital Nephrotic Syndrome. Dr. Weaver is currently accepting new patients.

    Ashley Chadha
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    Atrium Health Levine Children's Pulmonology

    1001 Blythe Blvd., Suite E, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Ashley Chadha is a Pediatrics provider in Charlotte, North Carolina. Dr. Chadha is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Cystic Fibrosis, Secondary Immunodeficiency (SID), Newborn Jaundice, and Wildervanck Syndrome. Dr. Chadha is currently accepting new patients.

    Jason Dranove
    Experienced in Koolen De Vries Syndrome
    Pediatric Gastroenterology | Hepatology
    Experienced in Koolen De Vries Syndrome
    Pediatric Gastroenterology | Hepatology

    Atrium Health Levine Children's Gastroenterology

    1001 Blythe Blvd., Suite F, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Jason Dranove is a Pediatric Gastroenterologist and a Hepatologist in Charlotte, North Carolina. Dr. Dranove is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Hirschsprung Disease, Neurogenic Bowel, Total Intestinal Aganglionosis, and Bowel Incontinence. Dr. Dranove is currently accepting new patients.

    Learn about our expert tiers
    Jacob C. Hartz
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Cardiology
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Cardiology

    Atrium Health Levine Children's HEARTest Yard Congenital Heart Center

    1001 Blythe Blvd., Suite 500, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Jacob Hartz is a Pediatrics specialist and a Pediatric Cardiologist in Charlotte, North Carolina. Dr. Hartz is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Homozygous Familial Hypercholesterolemia (HoFH), High Cholesterol, Defective Apolipoprotein B-100, Familial Hypertriglyceridemia, and Pacemaker Implantation. Dr. Hartz is currently accepting new patients.

    Experienced in Koolen De Vries Syndrome
    Pediatric Cardiology
    Experienced in Koolen De Vries Syndrome
    Pediatric Cardiology

    Atrium Health Levine Children's HEARTest Yard Congenital Heart Center

    1001 Blythe Blvd., Suite 500, 
    Charlotte, NC 
    Experience:
    17+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Matthew Lisi is a Pediatric Cardiologist in Charlotte, North Carolina. Dr. Lisi has been practicing medicine for over 17 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are CHARGE Syndrome, Microcephaly Deafness Syndrome, Wildervanck Syndrome, and Early Infantile Epileptic Encephalopathy. Dr. Lisi is currently accepting new patients.

    Erin O. Schotthoefer
    Advanced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics
    Advanced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics

    Charlotte Eye, Ear, Nose & Throat Associates, P.A. - Huntersville

    10305 Hamptons Park Drive, Suite 201, 
    Huntersville, NC 
    Experience:
    24+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Erin Schotthoefer is a Pediatrics specialist and an Ophthalmologist in Huntersville, North Carolina. Dr. Schotthoefer has been practicing medicine for over 24 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Strabismus, Astigmatism, Nearsightedness, and Esotropia. Dr. Schotthoefer is currently accepting new patients.

    Oleg Alekseev
    Advanced in Koolen De Vries Syndrome
    Ophthalmology
    Advanced in Koolen De Vries Syndrome
    Ophthalmology

    Duke Eye Center

    2351 Erwin Rd, 
    Durham, NC 
    Experience:
    10+ years
    Languages Spoken:
    English, Russian, Ukrainian
    Offers Telehealth

    My clinical focus is on inherited retinal degenerations, including conditions like retinitis pigmentosa, Stargardt disease, macular pattern dystrophies, syndromic retinal degenerations, and mimickers like autoimmune and iatrogenic retinopathies. Patients have access to advanced diagnostic modalities, including electrophysiology testing, various types of perimetry testing, specialized retinal imaging, as well as genetic testing. Dr. Alekseev is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Interstitial Keratitis, Cone-Rod Dystrophy, Retinopathy Pigmentary Mental Retardation, and Adult-Onset Vitelliform Macular Dystrophy (AVMD).

    Distinguished in Koolen De Vries Syndrome
    Distinguished in Koolen De Vries Syndrome

    Office

    2226 Nelson Hwy Ste 220, 
    Chapel Hill, NC 
    Languages Spoken:
    English

    Alessandro Iannaccone is an Ophthalmologist in Chapel Hill, North Carolina. Dr. Iannaccone is rated as a Distinguished 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 Type 2A, and X-Linked Retinitis Pigmentosa (XLRP).

    Kelly S. Acharya
    Experienced in Koolen De Vries Syndrome
    Reproductive Medicine
    Experienced in Koolen De Vries Syndrome
    Reproductive Medicine

    Duke Fertility Center

    5601 Arringdon Park Dr, 
    Morrisville, NC 
    Experience:
    14+ years
    Languages Spoken:
    English
    Offers Telehealth

    My goal in caring for my patients is to provide a personalized experience that addresses all aspects of an individual's life that may affect fertility. As director of the Duke Fertility Preservation Program and liaison for the Duke Prematurity Prevention clinic, I strive to provide fertility options to women who face complex medical and reproductive conditions. I am honored to provide hope to patients who are struggling to build their families now and those who are proactively planning for the future. My focus on evidence-based medicine, in conjunction with using the most-up-to date methods, allows me to provide highly individualized care for each of my patients. In addition to general infertility, my clinical interests include polycystic ovary syndrome, fertility preservation, egg freezing, recurrent pregnancy loss and history of preterm delivery, and providing LGBTQ+ inclusive care. I also enjoy caring for adolescents with reproductive disorders. Dr. Acharya is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Infertility, Koolen De Vries Syndrome, Polycystic Ovary Syndrome, and Ovarian Cysts.

    Elliott Mckee
    Experienced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics
    Experienced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics

    Charlotte Eye, Ear, Nose & Throat Associates, P.A. - SouthPark

    6035 Fairview Road, 
    Charlotte, NC 
    Experience:
    17+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Elliott Mckee is a Pediatrics specialist and an Ophthalmologist in Charlotte, North Carolina. Dr. Mckee has been practicing medicine for over 17 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, Oculomotor Apraxia Cogan Type, Isolated Duane Retraction Syndrome, and Hyperferritinemia-Cataract Syndrome. Dr. Mckee is currently accepting new patients.

    Lisa D. Hobson
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    Duke Electromyography Laboratory - Clinic 1L

    40 Duke Medicine Cir, 
    Durham, NC 
    Experience:
    25+ years
    Languages Spoken:
    English
    Offers Telehealth

    Lisa Hobson is a Neurologist in Durham, North Carolina. Dr. Hobson has been practicing medicine for over 25 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Myasthenia Gravis, Chronic Inflammatory Demyelinating Polyneuropathy, Peripheral Neuropathy, and Hypokalemic Periodic Paralysis.

    Jennifer L. Rogers
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    Duke Lupus Clinic - Clinic 1J

    40 Duke Medicine Cir, 
    Durham, NC 
    Experience:
    21+ years
    Languages Spoken:
    English
    Offers Telehealth

    As a rheumatologic, I care for people living with a range of autoimmune conditions. As Director of the Duke Lupus Clinic and Duke Lupus Registry, I specialize in systemic lupus erythematosus (SLE) and lupus related conditions. I was drawn to the field of rheumatology because of the complex, multi-system nature of autoimmune diseases and the many exciting advances in immune therapies. Rheumatology is a field where the most important part of my visit is listening and understanding my patients' journey. I work alongside an exceptional group of physicians, nurses, pharmacists, students, researchers, and staff. Together, our goal is to provide compassionate, comprehensive and state-of-the-art care for people living with lupus. Outside of clinic, I enjoy biking, running, and spending time with my family. Dr. Rogers is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Cutaneous Lupus Erythematosus (CLE), Systemic Lupus Erythematosus (SLE), Lupus Nephritis, and Discoid Lupus Erythematosus (DLE).

    Taressa A. Haney
    Experienced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics
    Experienced in Koolen De Vries Syndrome
    Ophthalmology | Pediatrics

    Charlotte Eye, Ear, Nose & Throat Associates, P.A. - Blakeney

    5933 Blakeney Park Drive, Suite 200, 
    Charlotte, NC 
    Experience:
    23+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Taressa Haney is a Pediatrics specialist and an Ophthalmologist in Charlotte, North Carolina. Dr. Haney has been practicing medicine for over 23 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Strabismus, Astigmatism, Esotropia, and Amblyopia. Dr. Haney is currently accepting new patients.

    Steven L. Frick
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Orthopedics
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Orthopedics

    Atrium Health Myers Park Orthopedics

    1350 S. Kings Drive, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Steven Frick is a Pediatric Orthopedics specialist and a Pediatrics provider in Charlotte, North Carolina. Dr. Frick is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Clubfoot, Claw Foot, Macrodactyly of the Foot, Osteotomy, and Tenotomy. Dr. Frick is currently accepting new patients.

    William Mcguirt
    Experienced in Koolen De Vries Syndrome
    Otolaryngology | Pediatric Otolaryngology
    Experienced in Koolen De Vries Syndrome
    Otolaryngology | Pediatric Otolaryngology

    Piedmont Ear, Nose, And Throat Associates -Kernersville

    280 Broad St, Ste B, 
    Kernersville, NC 
    Experience:
    37+ years
    Languages Spoken:
    English
    Offers Telehealth

    William Mcguirt is an Otolaryngologist and a Pediatric Otolaryngologist in Kernersville, North Carolina. Dr. Mcguirt has been practicing medicine for over 37 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Laryngomalacia, Otitis, Enlarged Adenoids, and Tongue Tie.

    Munes Fares
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Cardiology
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Cardiology

    Atrium Health Levine Children's HEARTest Yard Congenital Heart Center

    1001 Blythe Blvd., Suite 500, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients

    Munes Fares is a Pediatrics specialist and a Pediatric Cardiologist in Charlotte, North Carolina. Dr. Fares is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Transposition of the Great Arteries, Coronary Artery Aneurysm, Ventricular Septal Defects, Tetralogy of Fallot, and Heart Transplant. Dr. Fares is currently accepting new patients.

    Ramiro S. Maldonado
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    Duke Eye Center

    2351 Erwin Rd, 
    Durham, NC 
    Experience:
    24+ years
    Languages Spoken:
    English, Spanish
    Offers Telehealth

    I am an ophthalmologist dedicated to the study of retinal diseases in children and adults with special passion for genetics and inherited eye disorders. I was born and raised in Ecuador, where my father, one of the first retina specialist in the country, motivated me to do research to find cures for untreatable conditions. I am truly happy to have the opportunity to serve patients with retinal diseases and strive to provide the best care possible. Dr. Maldonado is rated as an Experienced 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.

    Jad R. Jabbour
    Experienced in Koolen De Vries Syndrome
    Otolaryngology
    Experienced in Koolen De Vries Syndrome
    Otolaryngology

    Charlotte Eye, Ear, Nose & Throat Associates, P.A. - SouthPark

    6035 Fairview Road, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Jad Jabbour is an Otolaryngologist in Charlotte, North Carolina. Dr. Jabbour is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Laryngomalacia, Enlarged Adenoids, Choanal Atresia, and Otitis. Dr. Jabbour is currently accepting new patients.

    John B. Allen
    Experienced in Koolen De Vries Syndrome
    Ophthalmology
    Experienced in Koolen De Vries Syndrome
    Ophthalmology

    Charlotte Eye, Ear, Nose & Throat Associates, P.A. - SouthPark

    6035 Fairview Road, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    John Allen is an Ophthalmologist in Charlotte, North Carolina. Dr. Allen is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Age-Related Macular Degeneration (ARMD), Late-Onset Retinal Degeneration, Retinal Artery Occlusion, and Diabetic Retinopathy. Dr. Allen is currently accepting new patients.

    Laura A. Caligiuri
    Experienced in Koolen De Vries Syndrome
    Pediatric Neurology
    Experienced in Koolen De Vries Syndrome
    Pediatric Neurology
    2301 Erwin Rd, 
    Durham, NC 
    Languages Spoken:
    English

    Laura Caligiuri is a Pediatric Neurologist in Durham, North Carolina. Dr. Caligiuri is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Cavernous Sinus Thrombosis, Cerebellum Agenesis Hydrocephaly, Zika Virus Disease, and Microcephaly with Spastic Quadriplegia. She is board certified in American Board Of Psychiatry & Neurology - Pediatric Neurology.

    Showing 1-20 of 66

    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 in North Carolina, 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 North Carolina, 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 North Carolina, 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 North Carolina, 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 North Carolina, 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 North Carolina, 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 North Carolina, 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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