The 20 Best CLN1 Disease Doctors Near Me in Ann Arbor, MI

Find the Top CLN1 Disease Experts and Specialists

Last Updated: 04/28/2026

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MediFind found 11 doctor with experience in CLN1 Disease near Ann Arbor, MI. Of these, 10 are Experienced and 1 are Advanced.

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11 providers found
    Advanced in CLN1 Disease
    Medical Genetics | Pediatrics
    Advanced in CLN1 Disease
    Medical Genetics | Pediatrics

    Domino's Farms

    24 Frank Lloyd Wright Dr Ste 1300, Lobby C, 
    Ann Arbor, MI 
     (4.0 miles away)
    Languages Spoken:
    English
    Offers Telehealth

    Cooking, spending time with my family. Dr. Ames is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 115 other conditions, according to our data. Her clinical expertise encompasses Delayed Growth, Cardiomyopathic Lentiginosis, Cardiofaciocutaneous Syndrome, and Noonan Syndrome. Dr. Ames is board certified in Pediatrics, Clinical Genetics & Genomics, and Medical Biochemical Genetics.

    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics
    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Dr. Pritchard is a Michigan native who returned to the University of Michigan to join the faculty here in 2019 after completing her pediatrics and genetics residencies and biochemical genetics fellowship. She enjoys care of complex patients with rare genetic diseases. Dr. Pritchard is active in medical education as Program Director for the Medical Biochemical Genetics Fellowship program and Associate Program Director for the Medical Genetics and Genomics training programs.Outside of work, Dr. Pritchard enjoys cooking, reading, hiking, and spending time with her husband and two daughters. Dr. Pritchard is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 149 other conditions, according to our data. Her clinical expertise encompasses Microcephaly Deafness Syndrome, Propionic Acidemia, Delayed Growth, and Cohen Syndrome.

    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics
    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English
    Offers Telehealth

    Mark Hannibal is a Medical Genetics specialist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. Dr. Hannibal is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 166 other conditions, according to our data. His clinical expertise encompasses Aase Syndrome, CHARGE Syndrome, Cockayne Syndrome Type 2, and Hennekam Syndrome. Dr. Hannibal is board certified in Clinical Genetics & Genomics.

    Learn about our expert tiers
    Experienced in CLN1 Disease
    Pediatric Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Nicole Pariseau is a Pediatric Neurologist practicing medicine in Ann Arbor, Michigan. Dr. Pariseau is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 122 other conditions, according to our data. Her clinical expertise encompasses Seizures, Generalized Tonic-Clonic Seizure, Conversion Disorder, and Memory Loss. Dr. Pariseau is board certified in Neurology W/Spec Qual Child Neuro.

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

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Angad Kochar is a Pediatrics specialist and a Pediatric Neurologist practicing medicine in Ann Arbor, Michigan. Dr. Kochar is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 4 other conditions, according to our data. His clinical expertise encompasses Trisomy 13, Seizures, Generalized Tonic-Clonic Seizure, and Camptocormism. Dr. Kochar is board certified in Neurology W/Spec Qual Child Neuro.

    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics
    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Shane Quinonez is a Medical Genetics specialist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. Dr. Quinonez is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 129 other conditions, according to our data. His clinical expertise encompasses Pompe Disease, Dihydrolipoamide Dehydrogenase Deficiency, MELAS Syndrome, and Maple Syrup Urine Disease. Dr. Quinonez is board certified in Pediatrics, Clinical Biochemical Genetics, and Clinical Genetics & Genomics.

    Experienced in CLN1 Disease
    Pediatric Neurology | Neuromusculoskeletal Medicine | Neurology
    Experienced in CLN1 Disease
    Pediatric Neurology | Neuromusculoskeletal Medicine | Neurology

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Ava Lin is a Neuromusculoskeletal Medicine specialist and a Neurologist practicing medicine in Ann Arbor, Michigan. Dr. Lin is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 10 other conditions, according to our data. Her clinical expertise encompasses Inclusion Body Myositis, Familial Dysautonomia, Hereditary Sensory Neuropathy Type 1 (HSN1), and Andermann Syndrome. Dr. Lin is board certified in Neurology W/Spec Qual Child Neuro and Neuromuscular Medicine.

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

    U Of M Neurology

    1500 E Medical Center Dr, 
    Ann Arbor, MI 
     (0.8 miles away)
    Languages Spoken:
    English

    Steven Leber is a Pediatrics specialist and a Pediatric Neurologist practicing medicine in Ann Arbor, Michigan. Dr. Leber is rated as an Experienced 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 Myoclonic Epilepsy, Seizures, Partial Seizure, and Dihydrolipoamide Dehydrogenase Deficiency.

    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics
    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics

    Domino's Farms

    24 Frank Lloyd Wright Dr Ste 1300, Lobby C, 
    Ann Arbor, MI 
     (4.0 miles away)
    Languages Spoken:
    English
    Offers Telehealth

    Dr. Lee earned her M.D. from Ross University School of Medicine in 2013, and completed Pediatric Residency at Ascension St. John Hospital in Grosse Point, MI, where she served as a Chief Pediatric Resident during her final year of residency. She completed Categorical Medical Genetics Residency at the University of Michigan in 2019. Following this she accepted a dual faculty position as a Clinical Lecturer in the Department of Pediatrics and Department of Internal Medicine for one year, before returning to Fellowship in 2020 to complete additional dedicated training in Medical Biochemical Genetics. After completion of Medical Biochemical Genetics Fellowship, she resumed her faculty position as a Clinical Assistant Professor in 2021. She is board certified in Pediatrics, and in Clinical and General Genetics.She has a dual faculty appointment in the Department of Pediatrics and the Department of Internal Medicine. As a faculty member in the Department of Pediatrics, she sees patients in the Pediatric Genetics and Biochemical Genetics Clinics, in addition to the newly created Multidisciplinary Genetics of Hearing Loss Clinic. As a faculty member in the Department of Internal Medicine, she sees patients in the Adult Medical Genetics and Cancer Genetics Clinics, in addition to patients with atypical diabetes and/or lipodystrophy in collaboration with MEND.In addition to her clinical responsibilities, Dr. Lee also enjoys spending time teaching and discussing various aspects of genetics with fellows, pediatric residents, medical students, and genetic counseling students. Dr. Lee is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 138 other conditions, according to our data. Her clinical expertise encompasses Biotinidase Deficiency, Delayed Growth, Beta-Ketothiolase Deficiency, and Triple X Syndrome. Dr. Lee is board certified in Pediatrics, Clinical Genetics & Genomics, and Medical Biochemical Genetics.

    Experienced in CLN1 Disease
    Medical Genetics | Family Medicine | Internal Medicine
    Experienced in CLN1 Disease
    Medical Genetics | Family Medicine | Internal Medicine

    Domino's Farms

    24 Frank Lloyd Wright Dr Ste 1300, Lobby C, 
    Ann Arbor, MI 
     (4.0 miles away)
    Languages Spoken:
    English
    Offers Telehealth

    Tomoyasu Higashimoto is a Medical Genetics specialist and an Internal Medicine provider practicing medicine in Ann Arbor, Michigan. Dr. Higashimoto is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. He is also highly rated in 110 other conditions, according to our data. His clinical expertise encompasses Nevoid Basal Cell Carcinoma Syndrome, Methylmalonic Acidemia, Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency, and Propionic Acidemia. Dr. Higashimoto is board certified in Family Medicine and Clinical Genetics & Genomics.

    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics
    Experienced in CLN1 Disease
    Medical Genetics | Pediatrics

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 6 Reception C, 
    Ann Arbor, MI 
     (0.7 miles away)
    Languages Spoken:
    English

    Christina Sloan is a Medical Genetics specialist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. Dr. Sloan is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. She is also highly rated in 115 other conditions, according to our data. Her clinical expertise encompasses Chromosome 6q Duplication, Chromosome 8p Deletion, Delayed Growth, and Fragile XE Syndrome. Dr. Sloan is board certified in Medical Biochemical Genetics and Clinical Genetics & Genomics.

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    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 near Ann Arbor, MI?

    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 Ann Arbor, MI?

    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 Ann Arbor, MI?

    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 Ann Arbor, MI?

    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 Ann Arbor, MI?

    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 Ann Arbor, MI?

    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 Ann Arbor, MI?

    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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