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

Find the Top Koolen De Vries Syndrome Experts and Specialists

The 20 Best Koolen De Vries Syndrome Doctors in Michigan, US

Last Updated: 02/22/2026

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MediFind found 467 doctor with experience in Koolen De Vries Syndrome near Michigan, US. Of these, 404 are Experienced, 62 are Advanced and 1 are Distinguished.

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467 providers found
    Andrzej Dlugosz
    Advanced in Koolen De Vries Syndrome
    Advanced in Koolen De Vries Syndrome

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
    Languages Spoken:
    English
    Offers Telehealth

    Andrzej Dlugosz is a Dermatologist in Ann Arbor, Michigan. Dr. Dlugosz is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Cicatricial Pemphigoid, Pemphigus, Bullous Pemphigoid, and Pemphigus Vulgaris.

    Julie A. Conley
    Advanced in Koolen De Vries Syndrome
    Advanced in Koolen De Vries Syndrome

    Corewell Health Pediatric Ophthalmology - 35 Michigan St NE

    35 Michigan Street Northeast, Suite 5101, 
    Grand Rapids, MI 
    Experience:
    17+ years
    Languages Spoken:
    English

    Julie Conley is a Pediatrics provider in Grand Rapids, Michigan. Dr. Conley has been practicing medicine for over 17 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Legius Syndrome, RASopathies, Neurofibromatosis, and Marcus Gunn Phenomenon.

    Chad E. Afman
    Advanced in Koolen De Vries Syndrome
    Pediatric Otolaryngology
    Advanced in Koolen De Vries Syndrome
    Pediatric Otolaryngology

    Corewell Health Ear, Nose And Throat - 4069 Lake Dr SE

    4069 Lake Drive Southeast, Suite 315, 
    Grand Rapids, MI 
    Experience:
    24+ years
    Languages Spoken:
    English
    Accepting New Patients

    Chad Afman is a Pediatric Otolaryngologist in Grand Rapids, Michigan. Dr. Afman 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. His top areas of expertise are Laryngomalacia, Enlarged Adenoids, Koolen De Vries Syndrome, and CHARGE Syndrome. Dr. Afman is currently accepting new patients.

    Learn about our expert tiers
    Brooke E. Geddie
    Advanced in Koolen De Vries Syndrome
    Advanced in Koolen De Vries Syndrome

    Corewell Health Pediatric Ophthalmology - 35 Michigan St NE

    35 Michigan Street Northeast, Suite 5101, 
    Grand Rapids, MI 
    Experience:
    21+ years
    Languages Spoken:
    English

    Brooke Geddie is a Pediatrics provider in Grand Rapids, Michigan. Dr. Geddie has been practicing medicine for over 21 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Lenz Microphthalmia Syndrome, Microphthalmia Syndromic 9, Micropthalmia Associated with Colobomatous Cyst, Marcus Gunn Phenomenon, and Vitrectomy.

    Edward R. Dabrowski
    Advanced in Koolen De Vries Syndrome
    Advanced in Koolen De Vries Syndrome

    Michigan Institute For Neurological Disorders (MIND)

    25100 Kelly Road, 
    Roseville, MI 
    Experience:
    46+ years
    Languages Spoken:
    English, German
    Accepting New Patients
    Offers Telehealth

    Edward Dabrowski is a Physiatrist in Roseville, Michigan. Dr. Dabrowski has been practicing medicine for over 46 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Cerebral Palsy, Spasticity, Spastic Diplegia Infantile Type, and Moebius Syndrome. Dr. Dabrowski is currently accepting new patients.

    Danielle A. Nolan
    Advanced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Neurology
    Advanced in Koolen De Vries Syndrome
    Pediatrics | Pediatric Neurology

    Corewell Health William Beaumont University Hospital Adult Neurosurgery Florence & Richard McBrien Pediatric Neuroscience Center - 3555 W 13 Mile Rd

    3555 West 13 Mile Road, Suite N300, 
    Royal Oak, MI 
    Experience:
    15+ years
    Languages Spoken:
    English
    Accepting New Patients

    Danielle Nolan is a Pediatrics specialist and a Pediatric Neurologist in Royal Oak, Michigan. Dr. Nolan has been practicing medicine for over 15 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Tuberous Sclerosis Complex, Tuberous Sclerosis, West Syndrome, and Seizures. Dr. Nolan is currently accepting new patients.

    Daniel Fain
    Advanced in Koolen De Vries Syndrome
    Pediatric Neurology
    Advanced in Koolen De Vries Syndrome
    Pediatric Neurology

    Helen DeVos Children's Hospital Neurology

    35 Michigan Street Northeast, Suite 3003, 
    Grand Rapids, MI 
    Experience:
    34+ years
    Languages Spoken:
    English
    Accepting New Patients

    Daniel Fain is a Pediatric Neurologist in Grand Rapids, Michigan. Dr. Fain has been practicing medicine for over 34 years and is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Legius Syndrome, and Seizures. Dr. Fain is currently accepting new patients.

    Linda Z. Rossetti
    Advanced in Koolen De Vries Syndrome
    Pediatrics | Medical Genetics
    Advanced in Koolen De Vries Syndrome
    Pediatrics | Medical Genetics

    Corewell Health Grand Rapids Hospitals Medical Genetics - 25 Michigan St NE

    25 Michigan Street Northeast, Suite 2100, 
    Grand Rapids, MI 
    Experience:
    10+ years
    Languages Spoken:
    English, Spanish

    Linda Rossetti is a Pediatrics specialist and a Medical Genetics provider in Grand Rapids, Michigan. Dr. Rossetti 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. Her top areas of expertise are Smith-Magenis Syndrome, Miller-Dieker Syndrome, Chromosome 6q Duplication, and Chromosome 8p Deletion.

    Distinguished in Koolen De Vries Syndrome
    Family Medicine
    Distinguished in Koolen De Vries Syndrome
    Family Medicine

    Macomb Medical Clinic PC

    2405 East 14 Mile Road, 
    Sterling Heights, MI 
    Experience:
    39+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Mark Rosenberg is a primary care provider, practicing in Family Medicine in Sterling Heights, Michigan. Dr. Rosenberg has been practicing medicine for over 39 years and is rated as a Distinguished provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Woodhouse-Sakati Syndrome, Duane-Radial Ray Syndrome, DK Phocomelia Syndrome, and Culler Jones Syndrome. Dr. Rosenberg is currently accepting new patients.

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

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
    Languages Spoken:
    English
    Offers Telehealth

    Marion Hofmann is a Cardiologist in Ann Arbor, Michigan. Dr. Hofmann is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Marfan Syndrome, Aortic Dissection, Familial Ventricular Tachycardia, Cardiac Ablation, and Pacemaker Implantation.

    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology
    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
    Languages Spoken:
    English

    Jimmy Lu is a Pediatric Cardiologist in Ann Arbor, Michigan. Dr. Lu is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Tetralogy of Fallot, Transposition of the Great Arteries, Hypoplastic Left Heart Syndrome (HLHS), and Mitral Atresia.

    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology
    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology

    Office

    1500 E Medical Center Dr Spc 5718, 
    Ann Arbor,, MI 
    Languages Spoken:
    English

    Joshua Meisner is a Pediatric Cardiologist in Ann Arbor,, Michigan. Dr. Meisner is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are CHARGE Syndrome, Noonan Syndrome, Cardiomyopathic Lentiginosis, and Cardiofaciocutaneous Syndrome.

    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology
    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor,, MI 
    Languages Spoken:
    English

    Mark Russell is a Pediatric Cardiologist in Ann Arbor,, Michigan. Dr. Russell is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Hypertrophic Cardiomyopathy (HCM), Cardiomyopathy, Congenital Heart Disease (CHD), Hypoplastic Left Heart Syndrome (HLHS), and Patent Foramen Ovale Repair.

    Advanced in Koolen De Vries Syndrome
    Pediatric Radiology
    Advanced in Koolen De Vries Syndrome
    Pediatric Radiology

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
    Languages Spoken:
    English

    David Bloom is a Pediatric Radiologist in Ann Arbor, Michigan. Dr. Bloom is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Neurogenic Bladder, PIK3CA-Related Overgrowth Spectrum, Atresia of Small Intestine, and Adams-Oliver Syndrome.

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

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
    Languages Spoken:
    English
    Offers Telehealth

    Tobias Else is an Endocrinologist in Ann Arbor, Michigan. Dr. Else is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Adrenal Cancer, Adrenocortical Carcinoma, Adrenal Gland Adenoma, Neuroendocrine Tumor, and Thyroidectomy.

    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology
    Advanced in Koolen De Vries Syndrome
    Pediatric Cardiology

    University Of Michigan Medical Center

    1500 E Medical Center Dr, 
    Ann Arbor,, MI 
    Languages Spoken:
    English

    Thor Thorsson is a Pediatric Cardiologist in Ann Arbor,, Michigan. Dr. Thorsson is rated as an Advanced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Tetralogy of Fallot, Hypoplastic Left Heart Syndrome (HLHS), Mitral Atresia, and Isthmian Coarctation.

    Patrick J. Droste
    Experienced in Koolen De Vries Syndrome
    Experienced in Koolen De Vries Syndrome

    Pediatric Ophthalmology PC - Cascade Road

    5050 Cascade Road Southeast, 
    Grand Rapids, MI 
    Experience:
    46+ years
    Languages Spoken:
    English
    Accepting New Patients

    Patrick Droste is a Pediatrics provider in Grand Rapids, Michigan. Dr. Droste has been practicing medicine for over 46 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Lenz Microphthalmia Syndrome, Micropthalmia Associated with Colobomatous Cyst, Microphthalmia Syndromic 9, and Retinochoroidal Coloboma. Dr. Droste is currently accepting new patients.

    Rawad Obeid
    Experienced in Koolen De Vries Syndrome
    Pediatric Neurology
    Experienced in Koolen De Vries Syndrome
    Pediatric Neurology

    Corewell Health William Beaumont University Hospital Adult Neurosurgery Florence & Richard McBrien Pediatric Neuroscience Center - 3555 W 13 Mile Rd

    3555 West 13 Mile Road, Suite N300, 
    Royal Oak, MI 
    Experience:
    20+ years
    Languages Spoken:
    English, Arabic, French, Spanish
    Accepting New Patients

    Rawad Obeid is a Pediatric Neurologist in Royal Oak, Michigan. Dr. Obeid has been practicing medicine for over 20 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Genetic Epilepsy with Febrile Seizures Plus (GEFS+), Microcephaly, Seizures, and Aicardi Syndrome. Dr. Obeid is currently accepting new patients.

    Lisa D. Maskill
    Experienced in Koolen De Vries Syndrome
    Pediatric Orthopedics
    Experienced in Koolen De Vries Syndrome
    Pediatric Orthopedics

    Corewell Health Pediatric Orthopedics - 35 Michigan St NE

    35 Michigan Street Northeast, Suite 4150, 
    Grand Rapids, MI 
    Experience:
    21+ years
    Languages Spoken:
    English
    Accepting New Patients

    Lisa Maskill is a Pediatric Orthopedics provider in Grand Rapids, Michigan. Dr. Maskill has been practicing medicine for over 21 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Brachydactyly Type C, Brachydactyly Type B, Sprengel Deformity, and Liebenberg Syndrome. Dr. Maskill is currently accepting new patients.

    Jessica R. Priestley
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Medical Genetics
    Experienced in Koolen De Vries Syndrome
    Pediatrics | Medical Genetics

    Corewell Health Grand Rapids Hospitals Biochemical Genetics - 25 Michigan St NE

    25 Michigan Street Northeast, Suite 2100, 
    Grand Rapids, MI 
    Experience:
    8+ years
    Languages Spoken:
    English

    Jessica Priestley is a Pediatrics specialist and a Medical Genetics provider in Grand Rapids, Michigan. Dr. Priestley has been practicing medicine for over 8 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Fabry Disease, Biotinidase Deficiency, Ornithine Transcarbamylase Deficiency, and Megalencephalic Leukoencephalopathy with Subcortical Cysts.

    Showing 1-20 of 467

    Last Updated: 02/22/2026

    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 Michigan, 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 Michigan, 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 Michigan, 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 Michigan, 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 Michigan, 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 Michigan, 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 Michigan, 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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