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    Last Updated: 03/06/2025

     
     
     
     
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    Learn about our doctor expertise tiers.
    If you have a rare or serious condition, you may want to seek advice from the best doctor you can find.
    In most cases, seeking advice from top-tier doctors may not be necessary.
    Elite
    • Global leaders in their field
    • Publish in medical journals frequently
    • Speak at conferences
    • Participate in clinical trials
    • Likely to work with cutting edge treatments
    • Likely to hold leadership positions in their organization
    Distinguished
    • Leaders in their field
    • Strong research portfolio
    • Likely to work with cutting edge treatments
    • Likely to be a leader in their field regionally
    Advanced
    • Excellent at diagnosing and treating conditions.
    • Treat many patients and have extensive experience in their field.
    • May not publish, speak at conferences, or participate in clinical trials.
    Experienced
    • Primarily treat patients rather than focus on research.
    • May be specialists or primary care physicians.
    • Have great experience in diagnosing and treating conditions.
    • Majority of doctors fall within this level of expertise.
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    MediFind found 106 doctor with experience in CLN1 Disease. Of these, 82 are Experienced, 16 are Advanced, 6 are Distinguished and 2 are Elite.

    Location:
    106 providers found
    Elite in CLN1 Disease
    Pediatric Neurology | Neurology
    Elite in CLN1 Disease
    Pediatric Neurology | Neurology
    601 Elmwood Ave, 
    Rochester, NY 
     (4725.1 mi)
    Languages Spoken:
    English

    Erika Augustine is a Pediatric Neurologist and a Neurologist in Rochester, New York. Dr. Augustine and is rated as an Elite provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Batten Disease, CLN3 Disease, CLN4 Disease, and CLN5 Disease.

    Elite in CLN1 Disease
    Pediatric Neurology | Neurology
    Elite in CLN1 Disease
    Pediatric Neurology | Neurology
    601 Elmwood Ave, 
    Rochester, NY 
     (4725.1 mi)
    Languages Spoken:
    English

    Jonathan Mink is a Pediatric Neurologist and a Neurologist in Rochester, New York. Dr. Mink and is rated as an Elite provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Batten Disease, CLN1 Disease, CLN3 Disease, CLN5 Disease, and Deep Brain Stimulation.

    What does Elite, Distinguished, Advanced, Experienced mean?
    Raymond Y. Wang
    Distinguished in CLN1 Disease
    Pediatrics | Medical Genetics
    Distinguished in CLN1 Disease
    Pediatrics | Medical Genetics

    CHOC Clinic

    1201 W La Veta Ave, 
    Orange, CA 
     (2529.8 mi)
    Languages Spoken:
    English

    Raymond Wang is a Pediatrics specialist and a Medical Genetics provider in Orange, California. Dr. Wang and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Mucopolysaccharidoses (MPS), Mucopolysaccharidosis Type 7 (MPS VII, Sly Syndrome), Mucopolysaccharidosis Type 1 (MPS I, Hurler Syndrome), and Pompe Disease.

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    Experienced in CLN1 Disease
    Experienced in CLN1 Disease

    Yale University

    800 Howard Ave, 
    New Haven, CT 
     (4981.6 mi)
    Languages Spoken:
    English

    Stephen Strittmatter is a Neurologist in New Haven, Connecticut. Dr. Strittmatter and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Alzheimer's Disease, Dementia, Creutzfeldt-Jakob Disease, and Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease).

    Experienced in CLN1 Disease
    Pediatric Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology
    335r Prairie Ave, Suite 1a, 
    Providence, RI 
     (5052.1 mi)
    Languages Spoken:
    English

    Luca Bartolini is a Pediatric Neurologist in Providence, Rhode Island. Dr. Bartolini and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Epilepsy, Genetic Epilepsy with Febrile Seizures Plus (GEFS+), Rasmussen Encephalitis, and Seizures.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease

    University Of Alabama Health Services Foundation, PC

    619 19th St S, 
    Birmingham, AL 
     (4306.0 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Erik Roberson is a Neurologist in Birmingham, Alabama. Dr. Roberson and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Frontotemporal Dementia, Dementia, Alzheimer's Disease, and CLN4 Disease. Dr. Roberson is currently accepting new patients.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease

    University Of Rochester

    919 Westfall Rd, Suite C220, 
    Rochester, NY 
     (4726.6 mi)
    Experience:
    36+ years
    Languages Spoken:
    English
    Offers Telehealth

    Frederick Marshall is a Neurologist in Rochester, New York. Dr. Marshall has been practicing medicine for over 36 years and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Batten Disease, CLN3 Disease, CLN4 Disease, CLN5 Disease, and Deep Brain Stimulation.

    Distinguished in CLN1 Disease
    Medical Genetics | Pediatrics
    Distinguished in CLN1 Disease
    Medical Genetics | Pediatrics

    Rutgers Health-Rwj Scleroderma Program

    89 French St, 
    New Brunswick, NJ 
     (4913.9 mi)
    Languages Spoken:
    English

    Milen Velinov is a Medical Genetics specialist and a Pediatrics provider in New Brunswick, New Jersey. Dr. Velinov and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Batten Disease, CLN4 Disease, CLN3 Disease, and CLN5 Disease.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease
    New York, NY 
     (4936.5 mi)
    Languages Spoken:
    English

    Jessica Cohen-Pfeffer is a Medical Genetics provider in New York, New York. Dr. Cohen-Pfeffer and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Phenylketonuria (PKU), CLN2 Disease, Batten Disease, and CLN3 Disease.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease
    15 Parkman St, Wac 835, 
    Boston, MA 
     (5061.8 mi)
    Languages Spoken:
    English

    Katherine Sims is a Neurologist in Boston, Massachusetts. Dr. Sims and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Batten Disease, Fabry Disease, CLN2 Disease, and CLN4 Disease.

    Advanced in CLN1 Disease
    Advanced in CLN1 Disease

    University Of California San Francisco

    350 Parnassus Ave, 
    San Francisco, CA 
     (2367.6 mi)
    Languages Spoken:
    English

    Bruce Miller is a Neurologist in San Francisco, California. Dr. Miller and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Frontotemporal Dementia, Dementia, Primary Progressive Aphasia, Alzheimer's Disease, and Endoscopy.

    Advanced in CLN1 Disease
    Advanced in CLN1 Disease

    Providence Medical Foundation

    2710 Dolbeer St, 
    Eureka, CA 
     (2375.6 mi)
    Languages Spoken:
    English
    Offers Telehealth

    Melissa Mckenzie is a Neurologist in Eureka, California. Dr. Mckenzie and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Hypokalemic Periodic Paralysis, Andersen-Tawil Syndrome, Thyrotoxic Periodic Paralysis, and Hyperkalemic Periodic Paralysis.

    Advanced in CLN1 Disease
    Advanced in CLN1 Disease
    801 N 29th St, 
    Billings, MT 
     (3232.4 mi)
    Languages Spoken:
    English

    Dennis Obrien is a Neurologist in Billings, Montana. Dr. Obrien and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are CLN2 Disease, Batten Disease, CLN5 Disease, and CLN4 Disease.

    Advanced in CLN1 Disease
    Neurology | Pain Medicine
    Advanced in CLN1 Disease
    Neurology | Pain Medicine

    University Physicians Incorporated

    13123 E 16th Ave, Children's Hospital Colorado, 
    Aurora, CO 
     (3316.8 mi)
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Chantal O'brien is a Neurologist and a Pain Medicine provider in Aurora, Colorado. Dr. O'brien and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Migraine, Seizures, Partial Seizure, and Absence Seizure. Dr. O'brien is currently accepting new patients.

    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics | Neurology
    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics | Neurology

    University Physicians Incorporated

    13123 E 16th Ave, Children's Hospital Colorado, 
    Aurora, CO 
     (3316.8 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Timothy Benke is a Pediatric Neurologist and a Pediatrics provider in Aurora, Colorado. Dr. Benke and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Rett Syndrome, West Syndrome, CDKL5 Deficiency Disorder, and Spasmus Nutans. Dr. Benke is currently accepting new patients.

    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics
    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics
    5323 Harry Hines Blvd, 
    Dallas, TX 
     (3730.1 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Berge Minassian is a Pediatric Neurologist and a Pediatrics provider in Dallas, Texas. Dr. Minassian and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Myoclonic Epilepsy, Epilepsy with Myoclonic-Atonic Seizures, Epilepsy, and Batten Disease. Dr. Minassian is currently accepting new patients.

    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics
    Advanced in CLN1 Disease
    Pediatric Neurology | Pediatrics
    5323 Harry Hines Blvd, 
    Dallas, TX 
     (3730.1 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Saima Kayani is a Pediatric Neurologist and a Pediatrics provider in Dallas, Texas. Dr. Kayani and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Rasmussen Encephalitis, Leigh Syndrome, CLN4 Disease, and CLN5 Disease. Dr. Kayani is currently accepting new patients.

    Advanced in CLN1 Disease
    Advanced in CLN1 Disease

    Mayo Clinic

    200 1st St Sw, 
    Rochester, MN 
     (3981.5 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Elaine Wirrell is a Neurologist in Rochester, Minnesota. Dr. Wirrell and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Myoclonic Epilepsy, Epilepsy, Seizures, and West Syndrome. Dr. Wirrell is currently accepting new patients.

    John J. Millichap
    Experienced in CLN1 Disease
    Pediatric Neurology | Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology | Neurology

    Precision Epilepsy PLLC

    IL 
     (4132.9 mi)
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    John Millichap is a Pediatric Neurologist and a Neurologist in Illinois. Dr. Millichap and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are West Syndrome, Epilepsy in Children, Spasmus Nutans, and Epilepsy. Dr. Millichap is currently accepting new patients.

    Advanced in CLN1 Disease
    Pediatric Neurology | Neurology
    Advanced in CLN1 Disease
    Pediatric Neurology | Neurology
    3900 Washington Ave # 100, 
    Evansville, IN 
     (4241.0 mi)
    Languages Spoken:
    English
    Accepting New Patients

    Lenora Lehwald is a Pediatric Neurologist and a Neurologist in Evansville, Indiana. Dr. Lehwald and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are CLN2 Disease, CLN5 Disease, CLN1 Disease, and CLN3 Disease. Dr. Lehwald is currently accepting new patients.

    Showing 1-20 of 106

    Last Updated: 03/06/2025

    What is the definition of CLN1 Disease?

    CLN1 disease is an inherited disorder that primarily affects the nervous system. Individuals with this condition have normal development in infancy, but typically by 18 months they become increasingly irritable and begin to lose previously acquired skills (developmental regression). In affected children, nerve cells in the brain die over time, leading to an overall loss of brain tissue (brain atrophy) and an unusually small head (microcephaly). Children with CLN1 disease have decreased muscle tone (hypotonia), intellectual and motor disability, and rarely are able to speak or walk. Some affected children develop repetitive hand movements. By age 2, individuals with this condition often have muscle twitches (myoclonus), recurrent seizures (epilepsy), and vision loss. Some affected children develop frequent respiratory infections. As the condition worsens, children have severe feeding difficulties that often require a feeding tube. Children with CLN1 disease usually do not survive past childhood.

    When should I see a CLN1 Disease 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 a CLN1 Disease 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 CLN1 Disease 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 CLN1 Disease 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 a CLN1 Disease 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 CLN1 Disease doctor search results page. 

    Why is it important to get a second opinion from a different CLN1 Disease 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 CLN1 Disease 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 CLN1 Disease 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 CLN1 Disease 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 CLN1 Disease doctors near me?

    Look for the filter feature on the left side of the CLN1 Disease 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 CLN1 Disease doctor that offers video calls?

    Look for the filter feature on the left-side of the CLN1 Disease 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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