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    Last Updated: 01/09/2026

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    MediFind found 8 doctor with experience in Koolen De Vries Syndrome near St Petersburg, FL. Of these, 8 are Experienced.

    Location
    LocationClose
    8 providers found
      Jorge Mccormack
      Experienced in Koolen De Vries Syndrome
      Pediatric Cardiology
      Experienced in Koolen De Vries Syndrome
      Pediatric Cardiology

      Pediatric Cardiology Associates

      625 6th Avenue South, Suite 120, Suite 120, 
      St Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English, Spanish
      Offers Telehealth

      Jorge Mccormack is a Pediatric Cardiologist in St Petersburg, Florida. Dr. Mccormack is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Congenital Heart Block, Heart Murmurs, Long QT Syndrome, and Wolff-Parkinson-White Syndrome.

      Kara Alexander
      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Johns Hopkins All Children's Hospital

      501 6th Avenue South, 
      Saint Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English

      Dr. Alexander is a diagnostic radiologist at Johns Hopkins All Children’s. She sees patients on the hospital’s St. Petersburg, Florida, campus. She joined the medical staff in 2025. She was previously a radiologist at Boston Children’s Hospital. Dr. Alexander earned her medical degree from the University of Kansas School of Medicine in Wichita. She completed a diagnostic radiology residency at the University of Missouri in Kansas City. She then completed a diagnostic pediatric radiology fellowship followed by a pediatric musculoskeletal radiology fellowship at Boston Children’s Hospital. Dr. Alexander is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Scoliosis, Osteochondritis Dissecans, Knock Knees, and Caffey Disease.

      Adrianna Vlachos
      Experienced in Koolen De Vries Syndrome
      Hematology | Pediatric Hematology Oncology
      Experienced in Koolen De Vries Syndrome
      Hematology | Pediatric Hematology Oncology

      Johns Hopkins All Children's Outpatient Care, St. Petersburg

      Saint Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English, Greek
      Offers Telehealth

      Dr. Vlachos is the chief of hematology in the Johns Hopkins All Children’s Hospital Cancer & Blood Disorders Institute in St. Petersburg, Florida, and professor of pediatrics (PAR) in the Johns Hopkins University School of Medicine. She joined the hospital staff in 2024. She was previously professor of pediatrics at Zucker School of Medicine at Hofstra/Northwell and attending physician in hematology/oncology at Cohen Children’s Medical Center/Northwell Health, where she was head of the Bone Marrow Failure Program and head of the pediatric hematology/oncology trials office. Dr. Vlachos is internationally known for clinical care and expertise in bone marrow failure syndromes and her transformational research in Diamond Blackfan anemia (DBA) syndrome, a rare inherited bone marrow failure syndrome. Dr. Vlachos is the founder and has directed the Diamond Blackfan Anemia Registry (DBAR) of North America since its inception in 1991. She is the principal investigator and co-investigator on multiple grants funded by the National Institute of Health and the Centers for Disease Control and Prevention. She has published numerous articles on her research findings and has been invited to author papers and book chapters on bone marrow failure syndromes and DBA. Dr. Vlachos is a member of the Medical and Scientific Advisory Board for the Shwachman-Diamond Syndrome Registry, is a member of the Scientific Advisory Board for the Diamond Blackfan Anemia Foundation and holds a position on the Scientific Program Committee for Bone Marrow Failure of the American Society of Hematology. She earned her medical degree from New York Medical College in Valhalla, New York. She completed her residency in pediatrics at North Shore University Hospital in Manhasset, New York. She then completed a clinical fellowship in bone marrow transplantation at North Shore University Hospital, followed by a fellowship in pediatric hematology-oncology and bone marrow transplantation at Mount Sinai Medical Center in New York. Videos Bone Marrow Failure Syndrome Expert Dr. Adrianna Vlachos at Johns Hopkins All Children’s. Dr. Vlachos is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Aase Syndrome, Pure Red Cell Aplasia, Aplastic Anemia, and Transient Erythroblastopenia of Childhood.

      Learn about our expert tiers
      Kathleen M. Wasylik
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology
      Experienced in Koolen De Vries Syndrome
      Pediatric Otolaryngology

      St Petersburg Outpatient Care Center - Pediatric Otolaryngology Head & Neck Surgery

      St Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English

      Dr. Wasylik is a pediatric ear, nose and throat surgeon at Johns Hopkins All Children’s Hospital. She sees patients in the Brandon, Clearwater, Odessa, Sarasota, and Tampa locations of Pediatric Otolaryngology Head & Neck Surgery Associates, PA and the Johns Hopkins All Children’s Outpatient Care location in St. Petersburg. Pediatric Otolaryngology Head & Neck Surgery Associates, PA is the exclusive provider of pediatric ear, nose and throat services at Johns Hopkins All Children’s Hospital. Dr. Wasylik's clinical interests include cochlear implants, bone anchored hearing aids, sinus surgery, airway reconstruction and cleft palates. She earned her medical degree from Tulane University School of Medicine in New Orleans. She trained in surgery and otolaryngology at Tulane Hospital and Clinic.She completed a fellowship in pediatric otolaryngology, head and neck surgery at the University of Minnesota in Minneapolis. Dr. Wasylik is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Enlarged Adenoids, Tongue Tie, Stridor, and Auditory Processing Disorder.

      Experienced in Koolen De Vries Syndrome
      Experienced in Koolen De Vries Syndrome

      Johns Hopkins All Children's Hospital

      501 6th Avenue South, 
      Saint Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English, Spanish
      Offers Telehealth

      Diana Marin is a Radiologist in Saint Petersburg, Florida. Dr. Marin is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Familial Short Stature (FSS), Idiopathic Short Stature (ISS), Short Stature (Growth Disorders), and Scoliosis.

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

      Office

      601 5th St S Ste 2, 
      Saint Petersburg, FL 
       (0.4 miles away)
      Languages Spoken:
      English

      Thieu Nguyen is a Pediatric Cardiologist in Saint Petersburg, Florida. Dr. Nguyen is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Aortopulmonary Window, Aorta-Pulmonary Artery Fistula, Ventricular Septal Defects, and Patent Ductus Arteriosus.

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

      BayCare Medical Group Primary Care I (Suncoast)

      620 10th St N Ste 1D, 
      Saint Petersburg, FL 
       (2.3 miles away)
      Languages Spoken:
      English

      Larry Ertel is a primary care provider, practicing in Family Medicine in Saint Petersburg, Florida. Dr. Ertel is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. His top areas of expertise are Glucocorticoid-Remediable Aldosteronism, Familial Hypertension, Hypertension, and Maturity Onset Diabetes of the Young.

      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner | Pediatric Neurology
      Experienced in Koolen De Vries Syndrome
      Nurse Practitioner | Pediatric Neurology
      601 5th St S, 
      St Petersburg, FL 
       (0.2 miles away)
      Languages Spoken:
      English

      Erin Petti is a Nurse Practitioner specialist and a Pediatric Neurologist in St Petersburg, Florida. Ms. Petti is rated as an Experienced provider by MediFind in the treatment of Koolen De Vries Syndrome. Her top areas of expertise are Transient Tic Disorder, Autism Spectrum Disorder, Genetic Epilepsy with Febrile Seizures Plus (GEFS+), and Aphantasia.

      Showing 1-8 of 8

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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 St Petersburg, FL?

      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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