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    Last Updated: 01/09/2026

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    MediFind found 100 doctor with experience in Koolen De Vries Syndrome near Grand Rapids, MI. Of these, 95 are Experienced and 5 are Advanced.

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    LocationClose
    100 providers found
      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 
       (0.9 miles away)
      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.

      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 
       (0.9 miles away)
      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 Microphthalmia Syndromic 9, Lenz Microphthalmia Syndrome, Micropthalmia Associated with Colobomatous Cyst, Marcus Gunn Phenomenon, and Vitrectomy.

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

      Corewell Health Pediatric Neurology - 35 Michigan St NE

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      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.

      Learn about our expert tiers
      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 
       (0.9 miles away)
      Experience:
      10+ years
      Languages Spoken:
      English, Spanish
      Offers Telehealth

      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.

      John W. Winters
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Corewell Health Pediatric Critical Care (PICU)

      100 Michigan Street Northeast, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      37+ years
      Languages Spoken:
      English

      John Winters is a Pediatrics provider in Grand Rapids, Michigan. Dr. Winters 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 Respiratory Syncytial Virus (RSV) Infection, Koolen De Vries Syndrome, Wildervanck Syndrome, and Microcephaly Deafness Syndrome.

      Krista M. Haines
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Corewell Health Grand Rapids Hospitals Neonatology - Helen DeVos Children's

      100 Michigan Street Northeast, Floor 3W, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      20+ years
      Languages Spoken:
      English

      Krista Haines is a Neonatologist in Grand Rapids, Michigan. Dr. Haines 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. Her top areas of expertise are Gastroschisis, Atresia of Small Intestine, Omphalocele, and Patent Ductus Arteriosus.

      Daniel S. Knee
      Experienced in Koolen De Vries Syndrome
      Neonatology
      Experienced in Koolen De Vries Syndrome
      Neonatology

      Corewell Health Grand Rapids Hospitals Neonatology - Helen DeVos Children's

      100 Michigan Street Northeast, Floor 3W, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      28+ years
      Languages Spoken:
      English

      Daniel Knee is a Neonatologist in Grand Rapids, Michigan. Dr. Knee has been practicing medicine for over 28 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Gastroschisis, Atresia of Small Intestine, Omphalocele, and Wolf-Hirschhorn Syndrome.

      Shefali Aggarwal
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Corewell Health Pediatric Critical Care (PICU)

      100 Michigan Street Northeast, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      12+ years
      Languages Spoken:
      English

      Shefali Aggarwal is a Pediatrics provider in Grand Rapids, Michigan. Dr. Aggarwal has been practicing medicine for over 12 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Chondrodystrophy, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, and Wildervanck Syndrome.

      Jeannette E. Prentice
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Corewell Health Grand Rapids Hospitals Neonatology - Helen DeVos Children's

      100 Michigan Street Northeast, Floor 3W, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      26+ years
      Languages Spoken:
      English

      Jeannette Prentice is a Neonatologist in Grand Rapids, Michigan. Dr. Prentice has been practicing medicine for over 26 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Gastroschisis, Atresia of Small Intestine, Omphalocele, and Kozlowski Warren Fisher Syndrome.

      Jodi K. Garvin
      Experienced in Koolen De Vries Syndrome
      Neonatology
      Experienced in Koolen De Vries Syndrome
      Neonatology

      Corewell Health Grand Rapids Hospitals Neonatology - Helen DeVos Children's

      100 Michigan Street Northeast, Floor 3W, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      13+ years
      Languages Spoken:
      English

      Jodi Garvin is a Neonatologist in Grand Rapids, Michigan. Dr. Garvin has been practicing medicine for over 13 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Gastroschisis, Atresia of Small Intestine, Tracheoesophageal Fistula, and Patent Ductus Arteriosus.

      Nga N. Dinh
      Experienced in Koolen De Vries Syndrome
      Neonatology
      Experienced in Koolen De Vries Syndrome
      Neonatology

      Corewell Health Grand Rapids Hospitals Neonatology - Helen DeVos Children's

      100 Michigan Street Northeast, Floor 3W, 
      Grand Rapids, MI 
       (0.4 miles away)
      Experience:
      19+ years
      Languages Spoken:
      English

      Nga Dinh is a Neonatologist in Grand Rapids, Michigan. Dr. Dinh has been practicing medicine for over 19 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Atresia of Small Intestine, Gastroschisis, Tracheoesophageal Fistula, and Patent Ductus Arteriosus.

      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 
       (0.9 miles away)
      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, Liebenberg Syndrome, and Brachydactyly Type A2. 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 
       (0.9 miles away)
      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, Ornithine Transcarbamylase Deficiency, Biotinidase Deficiency, and Multiple Sulfatase Deficiency.

      Sarah K. Depas
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner

      Corewell Health Pediatric Neurodevelopmental - Grand Rapids

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      25+ years
      Languages Spoken:
      English
      Accepting New Patients

      Sarah Depas is a Nurse Practitioner in Grand Rapids, Michigan. Ms. Depas 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 Koolen De Vries Syndrome, Orofaciodigital Syndrome 6, Lissencephaly 2, and Coach Syndrome. Ms. Depas is currently accepting new patients.

      Meghan R. Behrmann
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Corewell Health Pediatric Neurodevelopmental - Grand Rapids

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      17+ years
      Languages Spoken:
      English
      Accepting New Patients

      Meghan Behrmann is a Pediatrics provider in Grand Rapids, Michigan. Dr. Behrmann 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. Her top areas of expertise are Autism Spectrum Disorder, Delayed Growth, Cardiofaciocutaneous Syndrome, and 15q11.2 Microdeletion. Dr. Behrmann is currently accepting new patients.

      Rebecca S. Mccurdy
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner

      Corewell Health Pediatric Neurodevelopmental - Grand Rapids

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      14+ years
      Languages Spoken:
      English
      Accepting New Patients

      Rebecca Mccurdy is a Nurse Practitioner in Grand Rapids, Michigan. Ms. Mccurdy has been practicing medicine for over 14 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Koolen De Vries Syndrome, Bilateral Perisylvian Polymicrogyria, Lissencephaly 1, and Agyria Pachygyria Polymicrogyria. Ms. Mccurdy is currently accepting new patients.

      Casey J. Madura
      Experienced in Koolen De Vries Syndrome
      General Surgery
      Experienced in Koolen De Vries Syndrome
      General Surgery

      Corewell Health Pediatric Neurosurgery - 35 Michigan St NE

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      18+ years
      Languages Spoken:
      English

      Casey Madura is a General Surgeon in Grand Rapids, Michigan. Dr. Madura has been practicing medicine for over 18 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Lhermitte-Duclos Disease, Koolen De Vries Syndrome, CHARGE Syndrome, Pediatric Low-Grade Glioma (pLGG), and Craniectomy.

      Anne E. Thomas
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner

      Corewell Health Pediatric Sleep Disorders Clinic - Grand Rapids

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      17+ years
      Languages Spoken:
      English
      Accepting New Patients

      Anne Thomas is a Nurse Practitioner in Grand Rapids, Michigan. Ms. Thomas 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. Her top areas of expertise are Koolen De Vries Syndrome, Secondary Immunodeficiency (SID), Vocal Cord Dysfunction, and Sleepwalking (Somnambulism). Ms. Thomas is currently accepting new patients.

      Steven T. Deroos
      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology
      Experienced in Koolen De Vries Syndrome
      Pediatric Neurology

      Corewell Health Pediatric Neurology - 35 Michigan St NE

      35 Michigan Street Northeast, Suite 3003, 
      Grand Rapids, MI 
       (0.9 miles away)
      Experience:
      32+ years
      Languages Spoken:
      English
      Accepting New Patients

      Steven Deroos is a Pediatric Neurologist in Grand Rapids, Michigan. Dr. Deroos has been practicing medicine for over 32 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Duchenne Muscular Dystrophy, Seizures, Partial Seizure, and Microcephaly. Dr. Deroos is currently accepting new patients.

      John W. Kemppainen
      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 
       (0.9 miles away)
      Experience:
      19+ years
      Languages Spoken:
      English
      Accepting New Patients

      John Kemppainen is a Pediatric Orthopedics provider in Grand Rapids, Michigan. Dr. Kemppainen has been practicing medicine for over 19 years and is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Clubfoot, Legg-Calve-Perthes Disease (LCPD), Knock Knees, and Small Patella Syndrome. Dr. Kemppainen is currently accepting new patients.

      Showing 1-20 of 100

      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 near Grand Rapids, MI?

      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 Grand Rapids, MI?

      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 Grand Rapids, MI?

      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 Grand Rapids, MI?

      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 Grand Rapids, MI?

      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 Grand Rapids, MI?

      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 Grand Rapids, MI?

      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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