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    Last Updated: 03/06/2025

     
     
     
     
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    • Excellent at diagnosing and treating conditions.
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    MediFind found 8 doctor with experience in Oculocerebrocutaneous Syndrome. Of these, 4 are Advanced and 4 are Experienced.

    Location:
    8 providers found
    Advanced in Oculocerebrocutaneous Syndrome
    Medical Genetics | Pediatrics | Pediatric Neurology
    Advanced in Oculocerebrocutaneous Syndrome
    Medical Genetics | Pediatrics | Pediatric Neurology

    Fairview Express Care

    2450 Riverside Ave, 
    Minneapolis, MN 
     (1478.1 mi)
    Experience:
    47+ years
    Languages Spoken:
    English
    Accepting New Patients

    William Dobyns is a Medical Genetics specialist and a Pediatrics provider in Minneapolis, Minnesota. Dr. Dobyns has been practicing medicine for over 47 years and is rated as an Advanced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Increased Head Circumference, Lissencephaly, Polymicrogyria, and Cortical Dysplasia. Dr. Dobyns is currently accepting new patients.

    Advanced in Oculocerebrocutaneous Syndrome
    Ophthalmology
    Advanced in Oculocerebrocutaneous Syndrome
    Ophthalmology

    Group Health Plan Inc

    401 Phalen Blvd, 
    Saint Paul, MN 
     (1485.6 mi)
    Languages Spoken:
    English, German
    Accepting New Patients

    Knut Eichhorn is an Ophthalmologist in Saint Paul, Minnesota. Dr. Eichhorn and is rated as an Advanced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Oculocerebrocutaneous Syndrome and Graves Disease. Dr. Eichhorn is currently accepting new patients.

    What does Elite, Distinguished, Advanced, Experienced mean?
    Advanced in Oculocerebrocutaneous Syndrome
    Advanced in Oculocerebrocutaneous Syndrome

    The Curators Of The University Of Missouri

    1 Hospital Dr, 
    Columbia, MO 
     (1606.0 mi)
    Experience:
    17+ years
    Languages Spoken:
    English, Urdu
    Accepting New Patients

    Mohammed Siddiqui is a Radiologist in Columbia, Missouri. Dr. Siddiqui has been practicing medicine for over 17 years and is rated as an Advanced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Oculocerebrocutaneous Syndrome, Pleural Effusion, Pancreatic Adenoma, Gallbladder Removal, and Endoscopy. Dr. Siddiqui is currently accepting new patients.

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    Advanced in Oculocerebrocutaneous Syndrome
    Advanced in Oculocerebrocutaneous Syndrome

    Jonathan M Frantz, MD PA

    2500 Goodlette Frank Rd, 
    Naples, FL 
     (2564.8 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Christine Bokman is an Ophthalmologist in Naples, Florida. Dr. Bokman and is rated as an Advanced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. Her top areas of expertise are Oculocerebrocutaneous Syndrome, Eyelid Drooping, Ptosis, and Entropion. Dr. Bokman is currently accepting new patients.

    Experienced in Oculocerebrocutaneous Syndrome
    Dermatology
    Experienced in Oculocerebrocutaneous Syndrome
    Dermatology

    Forefront Dermatology Sc

    8144 Walnut Hill Ln, Suite 1300, 
    Dallas, TX 
     (1562.1 mi)
    Languages Spoken:
    English, Spanish
    Accepting New Patients

    Nnenna Agim is a Dermatologist in Dallas, Texas. Dr. Agim and is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. Her top areas of expertise are Chondrodysplasia Punctata with Steroid Sulfatase Deficiency, Punctate Porokeratosis, Focal Dermal Hypoplasia, and Aplasia Cutis Congenita. Dr. Agim is currently accepting new patients.

    Experienced in Oculocerebrocutaneous Syndrome
    Pediatrics | Dermatology
    Experienced in Oculocerebrocutaneous Syndrome
    Pediatrics | Dermatology
    6701 Fannin St, 8th Floor, 
    Houston, TX 
     (1754.3 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Denise Metry is a Pediatrics specialist and a Dermatologist in Houston, Texas. Dr. Metry and is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. Her top areas of expertise are PHACE Syndrome, Aplasia Cutis Congenita, Ectodermal Dysplasias, and Clouston Syndrome. Dr. Metry is currently accepting new patients.

    Experienced in Oculocerebrocutaneous Syndrome
    Plastic Surgery | Ophthalmology
    Experienced in Oculocerebrocutaneous Syndrome
    Plastic Surgery | Ophthalmology
    201 Pennsylvania Pkwy, Suite 225, 
    Indianapolis, IN 
     (1898.4 mi)
    Languages Spoken:
    English

    William Nunery is a Plastic Surgeon and an Ophthalmologist in Indianapolis, Indiana. Dr. Nunery and is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Ptosis, Entropion, Eyelid Drooping, Benign Essential Blepharospasm, and Vitrectomy.

    Experienced in Oculocerebrocutaneous Syndrome
    Neurosurgery
    Experienced in Oculocerebrocutaneous Syndrome
    Neurosurgery

    Norton Childrens Medical Group LLC

    210 E Gray St, Suite 1105, 
    Louisville, KY 
     (1956.7 mi)
    Languages Spoken:
    English

    William Gump is a Neurosurgery provider in Louisville, Kentucky. Dr. Gump and is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Oculocerebrocutaneous Syndrome, Brain Tumor, Hydrocephalus, and Epilepsy.

    Showing 1-8 of 8

    Last Updated: 03/06/2025

    What is the definition of Oculocerebrocutaneous Syndrome?

    Oculocerebrocutaneous (OCC) syndrome is a rare genetic disorder characterized primarily by eye, skin, and brain malformations. It has been described mostly in males. Findings in affected individuals may include orbital cysts, areas of underdeveloped (hypoplastic) or absent (aplastic) skin, and underdevelopment (hypoplasia) or absence (agenesis) of the band of nerve fibers that joins the brain's hemispheres (corpus callosum). Diagnosis is confirmed on the basis of specific MRI findings. In some affected individuals, the eye, skin, and brain findings involve only one side of the body. In these cases, the left side is involved twice as often as the right side. Additional findings may include rib and vertebral anomalies and craniofacial anomalies. Developmental delay and intellectual disability may be present and can vary from mild to profound. Approximately 50% of affected individuals have seizures. The exact cause of OCC syndrome is not known. In most cases, the affected individual is the first person in the family to have the disorder.

    When should I see an Oculocerebrocutaneous Syndrome doctor near me?

    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 an Oculocerebrocutaneous Syndrome doctor near me?

    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 Oculocerebrocutaneous Syndrome doctors near me?

    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 Oculocerebrocutaneous Syndrome doctors near me?

    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 an Oculocerebrocutaneous Syndrome doctor near me?

    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 Oculocerebrocutaneous Syndrome doctor search results page. 

    Why is it important to get a second opinion from a different Oculocerebrocutaneous 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 an Oculocerebrocutaneous Syndrome doctor near me?

    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 Oculocerebrocutaneous 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 Oculocerebrocutaneous 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 Oculocerebrocutaneous Syndrome doctors near me?

    Look for the filter feature on the left side of the Oculocerebrocutaneous 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 an Oculocerebrocutaneous Syndrome doctor that offers video calls?

    Look for the filter feature on the left-side of the Oculocerebrocutaneous 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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