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    Last Updated: 10/30/2025

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    MediFind found 10 doctor with experience in Oculocerebrocutaneous Syndrome near The United States. Of these, 7 are Experienced and 3 are Advanced.

    Location
    LocationClose
    10 providers found
      Advanced in Oculocerebrocutaneous Syndrome
      Advanced in Oculocerebrocutaneous Syndrome

      Jonathan M Frantz, MD PA

      2500 Goodlette Frank Rd, 
      Naples, FL 
      Languages Spoken:
      English
      Accepting New Patients

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

      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 
      Experience:
      48+ 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 48 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, Cerebellar Hypoplasia, and Cortical Dysplasia. Dr. Dobyns is currently accepting new patients.

      Advanced in Oculocerebrocutaneous Syndrome
      Ophthalmology
      Advanced in Oculocerebrocutaneous Syndrome
      Ophthalmology

      Group Health Plan Inc

      435 Phalen Blvd, 
      Saint Paul, MN 
      Languages Spoken:
      English, German
      Accepting New Patients

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

      Learn about our expert tiers
      Experienced in Oculocerebrocutaneous Syndrome
      Plastic Surgery | Ophthalmology
      Experienced in Oculocerebrocutaneous Syndrome
      Plastic Surgery | Ophthalmology
      201 Pennsylvania Pkwy, Suite 225, 
      Indianapolis, IN 
      Languages Spoken:
      English

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

      Experienced in Oculocerebrocutaneous Syndrome
      Obstetrics and Gynecology
      Experienced in Oculocerebrocutaneous Syndrome
      Obstetrics and Gynecology
      Msc Ob Gyn Department 1 University Of New Mexico, 
      Albuquerque, NM 
      Languages Spoken:
      English

      Karen Chong is an Obstetrics and Gynecologist in Albuquerque, New Mexico. Dr. Chong is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. Her top areas of expertise are Oculocerebrocutaneous Syndrome, Vaginal Bleeding Between Periods, Vaginal Bleeding in Pregnancy, Intrauterine Device Insertion, and Hormone Replacement Therapy (HRT).

      Experienced in Oculocerebrocutaneous Syndrome
      Neurosurgery
      Experienced in Oculocerebrocutaneous Syndrome
      Neurosurgery
      210 E Gray St Ste 1105, 
      Louisville, KY 
      Languages Spoken:
      English

      William Gump is a Neurosurgery provider in Louisville, Kentucky. Dr. Gump is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Tethered Cord Syndrome, Brain Herniation, Chiari Malformation Type 1, Chiari Malformation, and Laminectomy.

      Experienced in Oculocerebrocutaneous Syndrome
      Family Medicine
      Experienced in Oculocerebrocutaneous Syndrome
      Family Medicine
      30 N 4th St, 
      Lebanon, PA 
      Languages Spoken:
      English

      Syed Rizvi is a primary care provider, practicing in Family Medicine in Lebanon, Pennsylvania. Dr. Rizvi is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Neuroretinitis, Malignant Peripheral Nerve Sheath Tumor, Solitary Fibrous Tumor, Angioplasty, and Aneurysm Repair.

      Experienced in Oculocerebrocutaneous Syndrome
      Dermatology
      Experienced in Oculocerebrocutaneous Syndrome
      Dermatology

      Forefront Dermatology Sc

      8144 Walnut Hill Ln, Suite 1300, 
      Dallas, TX 
      Languages Spoken:
      English
      Accepting New Patients

      Nnenna Agim is a Dermatologist in Dallas, Texas. Dr. Agim 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, Pityriasis Lichenoides Chronica, Epidermal Nevus, and Pityriasis Lichenoides. 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 
      Languages Spoken:
      English
      Accepting New Patients

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

      Experienced in Oculocerebrocutaneous Syndrome
      Experienced in Oculocerebrocutaneous Syndrome

      Ssm Health Care Group

      1201 S Grand Blvd, 
      Saint Louis, MO 
      Experience:
      18+ years
      Languages Spoken:
      English, Urdu
      Accepting New Patients

      Mohammed Siddiqui is a Radiologist in Saint Louis, Missouri. Dr. Siddiqui has been practicing medicine for over 18 years and is rated as an Experienced provider by MediFind in the treatment of Oculocerebrocutaneous Syndrome. His top areas of expertise are Pleural Effusion, Pancreatic Adenoma, Gas Bloat Syndrome, Pleurisy, and Gallbladder Removal. Dr. Siddiqui is currently accepting new patients.

      Showing 1-10 of 10

      Last Updated: 10/30/2025

      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 in The United States?

      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 in The United States?

      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 in The United States?

      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 in The United States?

      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 in The United States?

      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 in The United States?

      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 in The United States?

      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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