The 20 Best CLN1 Disease Doctors in The United States

Find the Top CLN1 Disease Experts and Specialists

Last Updated: 04/28/2026

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MediFind found 193 doctor with experience in CLN1 Disease near The United States. Of these, 150 are Experienced, 34 are Advanced, 6 are Distinguished and 3 are Elite.

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193 providers found
    Elite in CLN1 Disease
    Medical Genetics
    Elite in CLN1 Disease
    Medical Genetics
    1201 West La Veta Avenue, 
    Orange, CA 
    Languages Spoken:
    English

    Raymond Wang is a Medical Genetics provider practicing medicine in Orange, California. Dr. Wang is rated as an Elite provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 50 other conditions, according to our data. His clinical expertise encompasses Mucopolysaccharidoses (MPS), Mucopolysaccharidosis Type 7 (MPS VII, Sly Syndrome), Mucopolysaccharidosis Type 1 (MPS I, Hurler Syndrome), Pompe Disease, and Adenoidectomy.

    Elite in CLN1 Disease
    Pediatric Neurology
    Elite in CLN1 Disease
    Pediatric Neurology

    University Of Rochester

    601 Elmwood Ave, 
    Rochester, NY 
    Languages Spoken:
    English

    Erika Augustine is a Pediatric Neurologist practicing medicine in Rochester, New York. Dr. Augustine is rated as an Elite provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 9 other conditions, according to our data. Her clinical expertise encompasses Batten Disease, CLN3 Disease, CLN1 Disease, and CLN5 Disease.

    Elite in CLN1 Disease
    Pediatric Neurology
    Elite in CLN1 Disease
    Pediatric Neurology

    University Of Rochester

    601 Elmwood Ave, 
    Rochester, NY 
    Languages Spoken:
    English

    Jonathan Mink is a Pediatric Neurologist practicing medicine in Rochester, New York. Dr. Mink is rated as an Elite provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 8 other conditions, according to our data. His clinical expertise encompasses Batten Disease, CLN1 Disease, CLN4 Disease, CLN5 Disease, and Deep Brain Stimulation.

    Learn about our expert tiers
    Distinguished in CLN1 Disease
    Neurology | Pediatrics
    Distinguished in CLN1 Disease
    Neurology | Pediatrics

    UT Southwestern - Neurology

    5323 Harry Hines Blvd., 
    Dallas, TX 
    Languages Spoken:
    English

    Saima Kayani is a Neurologist and a Pediatrics provider practicing medicine in Dallas, Texas. Dr. Kayani is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 49 other conditions, according to our data. Her clinical expertise encompasses Leigh Syndrome, CLN4 Disease, CLN1 Disease, and CLN3 Disease.

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

    Brighton Center For Specialty Care

    7500 Challis Rd, Entrance 1, Level 2, 
    Brighton, MI 
    Languages Spoken:
    English

    Eric Armour is a Pediatrics specialist and a Neurologist practicing medicine in Brighton, Michigan. Dr. Armour is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 34 other conditions, according to our data. His clinical expertise encompasses Seizures, Generalized Tonic-Clonic Seizure, Tuberous Sclerosis, and Tuberous Sclerosis Complex. Dr. Armour is board certified in Clinical Neurophysiology, Neurology W/Spec Qual Child Neuro, and Epilepsy.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease

    Child Health Institute Of New Jersey

    89 French St Ste 2300, 
    New Brunswick, NJ 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Milen Velinov is a Pediatrics provider practicing medicine in New Brunswick, New Jersey. Dr. Velinov is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 7 other conditions, according to our data. His clinical expertise encompasses Batten Disease, CLN1 Disease, CLN4 Disease, and CLN5 Disease. Dr. Velinov is currently accepting new patients.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease

    UAB Hospital Birmingham

    619 19th St S, 
    Birmingham, AL 
    Languages Spoken:
    English

    Erik Roberson is a Neurologist practicing medicine in Birmingham, Alabama. Dr. Roberson is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 19 other conditions, according to our data. His clinical expertise encompasses Frontotemporal Dementia, Dementia, Alzheimer's Disease, and CLN3 Disease.

    Distinguished in CLN1 Disease
    Pediatric Neurology
    Distinguished in CLN1 Disease
    Pediatric Neurology

    Imaging-East River Road

    200 E River Rd, 
    Rochester, NY 
    Languages Spoken:
    English

    Jennifer Vermilion is a Pediatric Neurologist practicing medicine in Rochester, New York. Dr. Vermilion is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 11 other conditions, according to our data. Her clinical expertise encompasses Tourette Syndrome, Batten Disease, CLN3 Disease, and CLN1 Disease.

    Distinguished in CLN1 Disease
    Pediatric Neurology
    Distinguished in CLN1 Disease
    Pediatric Neurology

    Rush University Medical Center

    1725 W Harrison St Ste 710, 
    Chicago, IL 
    Languages Spoken:
    English
    Offers Telehealth

    Elizabeth Berry is a Pediatric Neurologist practicing medicine in Chicago, Illinois. Dr. Berry is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 19 other conditions, according to our data. Her clinical expertise encompasses Fragile X Syndrome, Niemann-Pick Disease, Autism Spectrum Disorder, and Rett Syndrome.

    Distinguished in CLN1 Disease
    Distinguished in CLN1 Disease

    Department Of Neurology-Westfall Road Clinic At Clinton Crossings

    919 Westfall Rd Ste 220, 
    Rochester, NY 
    Languages Spoken:
    English
    Offers Telehealth

    Frederick Marshall is a Neurologist practicing medicine in Rochester, New York. Dr. Marshall is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 18 other conditions, according to our data. His clinical expertise encompasses Batten Disease, CLN3 Disease, CLN1 Disease, CLN5 Disease, and Deep Brain Stimulation.

    Advanced in CLN1 Disease
    Medical Genetics
    Advanced in CLN1 Disease
    Medical Genetics
    1201 West La Veta Avenue, 
    Orange, CA 
    Languages Spoken:
    English
    Accepting New Patients

    Jose Abdenur is a Medical Genetics provider practicing medicine in Orange, California. Dr. Abdenur is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 41 other conditions, according to our data. His clinical expertise encompasses Von Gierke Disease, Glycogen Storage Disease Type 3, Malonyl-CoA Decarboxylase Deficiency, and Hyperlysinemia. Dr. Abdenur is currently accepting new patients.

    Advanced in CLN1 Disease
    Medical Genetics
    Advanced in CLN1 Disease
    Medical Genetics
    1201 West La Veta Avenue, 
    Orange, CA 
    Languages Spoken:
    English
    Accepting New Patients

    Richard Chang is a Medical Genetics provider practicing medicine in Orange, California. Dr. Chang is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 156 other conditions, according to our data. His clinical expertise encompasses Phenylketonuria (PKU), Maternal Hyperphenylalaninemia, Arginase Deficiency, and Urea Cycle Disorders (UCD). Dr. Chang is currently accepting new patients.

    Advanced in CLN1 Disease
    Medical Genetics
    Advanced in CLN1 Disease
    Medical Genetics
    1201 West La Veta Avenue, 
    Orange, CA 
    Languages Spoken:
    English
    Accepting New Patients

    Cristel Chapel is a Medical Genetics provider practicing medicine in Orange, California. Dr. Chapel is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 20 other conditions, according to our data. Her clinical expertise encompasses CLN4 Disease, CLN2 Disease, CLN3 Disease, and CLN5 Disease. Dr. Chapel is currently accepting new patients.

    Advanced in CLN1 Disease
    Pediatric Neurology
    Advanced in CLN1 Disease
    Pediatric Neurology

    Office

    1725 W Harrison St Ste 718, 
    Chicago, IL 
    Languages Spoken:
    English
    Offers Telehealth

    Lubov Romantseva is a Pediatric Neurologist practicing medicine in Chicago, Illinois. Dr. Romantseva is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 11 other conditions, according to our data. Her clinical expertise encompasses Seizures, CLN3 Disease, CLN5 Disease, and Batten Disease.

    Advanced in CLN1 Disease
    Pediatric Neurology
    Advanced in CLN1 Disease
    Pediatric Neurology
    1201 West La Veta Avenue, 
    Orange, CA 
    Languages Spoken:
    English
    Accepting New Patients

    Donald Phillips is a Pediatric Neurologist practicing medicine in Orange, California. Dr. Phillips is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 37 other conditions, according to our data. His clinical expertise encompasses West Syndrome, Landau-Kleffner Syndrome, Epilepsy, and Seizures. Dr. Phillips is currently accepting new patients.

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

    Texas Health Care, P.L.L.C.

    400 E John Carpenter Fwy, 
    Irving, TX 
    Languages Spoken:
    English

    Andrea Lowden is a Pediatric Neurologist and a Pediatrics provider practicing medicine in Irving, Texas. Dr. Lowden is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 19 other conditions, according to our data. Her clinical expertise encompasses Seizures, Epilepsy, Generalized Tonic-Clonic Seizure, and Memory Loss. Dr. Lowden is board certified in Neurology With Special Qualification In Child Neurology- American Board Of Psychiatry And Neurology and Psychiatry- American Board Of Psychiatry And Neurology.

    Experienced in CLN1 Disease
    Pediatric Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology

    Cleveland Clinic Main Campus

    9500 Euclid Avenue, 
    Cleveland, OH 
    Experience:
    32+ years
    Languages Spoken:
    English
    Offers Telehealth

    Sumit Parikh is a Pediatric Neurologist practicing medicine in Cleveland, Ohio. He has been practicing medicine for over 32 years. Dr. Parikh is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 168 other conditions, according to our data. His clinical expertise encompasses Kearns-Sayre Syndrome, Maternally Inherited Leigh Syndrome, Leigh Syndrome, and MELAS Syndrome. Dr. Parikh is board certified in American Board Of Psychiatry And Neurology, 2006.

    Experienced in CLN1 Disease
    Experienced in CLN1 Disease
    259 E Erie St Ste 1900, Lavin Family Pavilion, 
    Chicago, IL 
    Experience:
    34+ years
    Languages Spoken:
    English
    Offers Telehealth

    Dimitri Krainc is a Neurologist practicing medicine in Chicago, Illinois. He has been practicing medicine for over 34 years. Dr. Krainc is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 8 other conditions, according to our data. His clinical expertise encompasses Movement Disorders, Parkinson's Disease, Farber Lipogranulomatosis, Drug Induced Dyskinesia, and Deep Brain Stimulation. Dr. Krainc is board certified in American Board Of Psychiatry And Neurology - Neurology (Certified).

    Experienced in CLN1 Disease
    Neurology | Pediatric Neurology
    Experienced in CLN1 Disease
    Neurology | Pediatric Neurology

    Specialists In Pediatric Neurology PLLC

    7001 Orchard Lake Road, Suite 320C, 
    West Bloomfield, MI 
    Experience:
    23+ years
    Languages Spoken:
    English
    Accepting New Patients

    Daniel Arndt is a Neurologist and a Pediatric Neurologist practicing medicine in West Bloomfield, Michigan. He has been practicing medicine for over 23 years. Dr. Arndt is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 24 other conditions, according to our data. His clinical expertise encompasses Seizures, Generalized Tonic-Clonic Seizure, Absence Seizure, and Memory Loss. Dr. Arndt is board certified in American Board Of Psychiatry And Neurology and American Board Of Psychiatry And Neurology. Dr. Arndt is currently accepting new patients.

    Experienced in CLN1 Disease
    Pediatric Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology

    Cohen Children's Northwell Health Physician Partners Pediatric Neurology

    2001 Marcus Avenue, Suite W290, 
    Lake Success, NY 
    Languages Spoken:
    English

    Obehioya Irumudomon is a Pediatric Neurologist practicing medicine in Lake Success, New York. Dr. Irumudomon is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Her clinical expertise encompasses Primary Lateral Sclerosis, Riboflavin Transporter Deficiency Neuronopathy, Genetic Epilepsy with Febrile Seizures Plus (GEFS+), and Generalized Tonic-Clonic Seizure. Dr. Irumudomon is board certified in American Board Of Psychiatry & Neurology-Neurophysiology and American Board Of Psychiatry & Neurology-Neurology With Special Qualifications In Child Neurology.

    Showing 1-20 of 193

    Last Updated: 04/28/2026

    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 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 a CLN1 Disease 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 CLN1 Disease 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 CLN1 Disease 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 a CLN1 Disease 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 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 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 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 in The United States?

    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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