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    Last Updated: 01/09/2026

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    MediFind found 70 doctor with experience in Koolen De Vries Syndrome near North Carolina, US. Of these, 63 are Experienced, 6 are Advanced and 1 are Distinguished.

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    LocationClose
    70 providers found
      Distinguished in Koolen De Vries Syndrome
      Distinguished in Koolen De Vries Syndrome

      University Of North Carolina At Chapel Hill

      2226 Nelson Hwy, Suite 200, 
      Chapel Hill, NC 
      Languages Spoken:
      English
      Accepting New Patients

      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 Retinitis Pigmentosa, Retinopathy Pigmentary Mental Retardation, X-Linked Retinitis Pigmentosa (XLRP), and Usher Syndrome Type 2A. Dr. Iannaccone is currently accepting new patients.

      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, Nephrotic Syndrome, CHARGE Syndrome, Koolen De Vries Syndrome, and Kidney Transplant. 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 Microcephaly Deafness Syndrome. Dr. Chadha is currently accepting new patients.

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      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.

      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), Ventricular Septal Defects, Tetralogy of Fallot, Heart Murmurs, 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 Marfan Syndrome, Arachnodactyly, Congenital Contractural Arachnodactyly, and Dilated Cardiomyopathy with Hypergonadotropic Hypogonadism. 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 M. 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
      Accepting New Patients
      Offers Telehealth

      Oleg Alekseev is an Ophthalmologist in Durham, North Carolina. Dr. Alekseev has been practicing medicine for over 10 years and 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, Koolen De Vries Syndrome, and Duane-Radial Ray Syndrome. Dr. Alekseev is currently accepting new patients.

      Experienced in Koolen De Vries Syndrome
      Orthopedics
      Experienced in Koolen De Vries Syndrome
      Orthopedics
      Medical Center Blvd, 
      Winston Salem, NC 
      Languages Spoken:
      English
      Accepting New Patients

      John Frino is an Orthopedics provider in Winston Salem, North Carolina. Dr. Frino is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Scoliosis, Knock Knees, Clubfoot, Spondylocarpotarsal Synostosis Syndrome, and Hip Replacement. Dr. Frino is currently accepting new patients.

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

      Wake Forest University Health Sciences

      Medical Ctr Blvd, 
      Winston Salem, NC 
      Experience:
      44+ years
      Languages Spoken:
      English
      Accepting New Patients

      James Browne is a Plastic Surgeon and an Otolaryngologist in Winston Salem, North Carolina. Dr. Browne has been practicing medicine for over 44 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Laryngeal Cancer, Adenoid Cystic Carcinoma, Tongue Cancer, Glossectomy, and Gastrostomy. Dr. Browne is currently accepting new patients.

      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 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Kelly Acharya is a Reproductive Medicine provider in Morrisville, North Carolina. 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. Dr. Acharya is currently accepting new patients.

      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 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Elliott Mckee is a Pediatrics specialist and an Ophthalmologist in Charlotte, North Carolina. Dr. Mckee 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-Webb
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Duke Electromyography Laboratory - Clinic 1L

      40 Duke Medicine Cir, 
      Durham, NC 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Lisa Hobson-Webb is a Neurologist in Durham, North Carolina. Dr. Hobson-Webb 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. Dr. Hobson-Webb is currently accepting new patients.

      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 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Jennifer Rogers is a Rheumatologist in Durham, North Carolina. 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). Dr. Rogers is currently accepting new patients.

      Michelle Festa
      Experienced in Koolen De Vries Syndrome
      Family Medicine
      Experienced in Koolen De Vries Syndrome
      Family Medicine

      Novant Health Primary Care Poplar Tent

      9955 Poplar Tent Road, 
      Concord, NC 
      Experience:
      36+ years
      Languages Spoken:
      English
      Offers Telehealth

      Michelle Festa is a primary care provider, practicing in Family Medicine in Concord, North Carolina. Dr. Festa has been practicing medicine for over 36 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Williams Syndrome, High Cholesterol, Migraine, and Glucocorticoid-Remediable Aldosteronism.

      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, Congenital Contractures, Popliteal Pterygium Syndrome, 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, Truncus Arteriosus, Coronary Artery Aneurysm, and Ventricular Septal Defects. 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 
      Languages Spoken:
      English, Spanish
      Accepting New Patients
      Offers Telehealth

      Ramiro Maldonado is an Ophthalmologist in Durham, North Carolina. 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. Dr. Maldonado is currently accepting new patients.

      Showing 1-20 of 70

      Last Updated: 01/09/2026

      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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