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    Last Updated: 06/27/2025

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    MediFind found 24 doctor with experience in CLN1 Disease near Rochester, NY. Of these, 17 are Experienced, 3 are Advanced, 3 are Distinguished and 1 are Elite.

    Location
    LocationClose
    24 providers found
      Elite in CLN1 Disease
      Pediatric Neurology | Neurology
      Elite in CLN1 Disease
      Pediatric Neurology | Neurology
      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 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, CLN1 Disease, and CLN5 Disease.

      Distinguished in CLN1 Disease
      Pediatric Neurology
      Distinguished in CLN1 Disease
      Pediatric Neurology
      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 mi)
      Languages Spoken:
      English

      Jonathan Mink is a Pediatric Neurologist in Rochester, New York. Dr. Mink and is rated as a Distinguished provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Batten Disease, CLN2 Disease, CLN1 Disease, CLN4 Disease, and Deep Brain Stimulation.

      What does Elite, Distinguished, Advanced, Experienced mean?
      Distinguished in CLN1 Disease
      Distinguished in CLN1 Disease

      University Of Rochester

      919 Westfall Rd, Suite C220, 
      Rochester, NY 
       (3.0 mi)
      Languages Spoken:
      English
      Offers Telehealth

      Frederick Marshall is a Neurologist in Rochester, New York. Dr. Marshall 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, CLN1 Disease, CLN5 Disease, and Deep Brain Stimulation.

      Learn about our expert tiers
      Advanced in CLN1 Disease
      Pediatric Neurology | Neurology
      Advanced in CLN1 Disease
      Pediatric Neurology | Neurology
      601 Elmwood Ave, 
      Rochester, NY 
       (2.5 mi)
      Languages Spoken:
      English

      Jennifer Vermilion is a Pediatric Neurologist and a Neurologist in Rochester, New York. Dr. Vermilion and is rated as an Advanced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Stereotypic Movement Disorder, Tourette Syndrome, Transient Tic Disorder, and Batten Disease.

      Experienced in CLN1 Disease
      Medical Genetics
      Experienced in CLN1 Disease
      Medical Genetics
      601 Elmwood Ave, University Of Rochester Medical Center, 
      Rochester, NY 
       (2.5 mi)
      Languages Spoken:
      English

      Paul Rothberg is a Medical Genetics provider in Rochester, New York. Dr. Rothberg and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. His top areas of expertise are CLN4 Disease, CLN3 Disease, Batten Disease, and CLN1 Disease.

      Distinguished in CLN1 Disease
      Distinguished in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Naomi Miller practices in Toronto, Canada. Ms. Miller and is rated as a Distinguished expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Mucopolysaccharidosis Type 4A (MPS IVA, Morquio Syndrome Type A), Mucopolysaccharidoses (MPS), CLN4 Disease, Batten Disease, and Mastectomy.

      Advanced in CLN1 Disease
      Advanced in CLN1 Disease
      Peterborough, ON, CA 
       (86.5 mi)

      William Kim practices in Peterborough, Canada. Mr. Kim and is rated as an Advanced expert by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Batten Disease, CLN2 Disease, CLN1 Disease, and CLN3 Disease.

      Advanced in CLN1 Disease
      Advanced in CLN1 Disease
      399 Bathurst Street, 
      Toronto, ON, CA 
       (96.5 mi)

      Danielle Andrade practices in Toronto, Canada. Ms. Andrade and is rated as an Advanced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Myoclonic Epilepsy, Epilepsy, Epilepsy with Myoclonic-Atonic Seizures, Seizures, and Deep Brain Stimulation.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease

      St. Michael's Hospital/Unity Health Toronto

      Toronto, ON, CA 
       (95.2 mi)

      Miguel Pimentel-Cruz practices in Toronto, Canada. Mr. Pimentel-Cruz and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Retinal Detachment, Dyskeratosis Congenita, Age-Related Macular Degeneration (ARMD), CMV Retinitis, and Vitrectomy.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      686 Bay Street, 
      Toronto, ON, CA 
       (95.6 mi)

      Lucie Dupuis practices in Toronto, Canada. Ms. Dupuis and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Infantile Neutropenia, Febrile Neutropenia, Osteopathia Striata Cranial Sclerosis, Agranulocytosis, and Bone Marrow Transplant.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      149 College Street, 
      Toronto, ON, CA 
       (96.0 mi)

      Ajoy Vincent practices in Toronto, Canada. Vincent and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Their top areas of expertise are X-Linked Congenital Stationary Night Blindness, Bardet-Biedl Syndrome, Late-Onset Retinal Degeneration, and Retinitis Pigmentosa.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      155 College St, 
      Toronto, CA 
       (96.0 mi)

      Anne-claude Gingras practices in Toronto, Canada. Gingras and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Their top areas of expertise are COVID-19, Severe Acute Respiratory Syndrome (SARS), Hydrocephalus Skeletal Anomalies, and Bloom Syndrome.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      160 College Street, 
      Toronto, ON, CA 
       (96.1 mi)

      Julia Petschnigg practices in Toronto, Canada. Ms. Petschnigg and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are EGFR Positive Lung Cancer, CLN5 Disease, CLN1 Disease, and Batten Disease.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      399 Bathurst Street, 
      Toronto, ON, CA 
       (96.5 mi)

      Anthony Lang practices in Toronto, Canada. Mr. Lang and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Movement Disorders, Parkinson's Disease, Progressive Supranuclear Palsy Atypical, Deep Brain Stimulation, and Appendectomy.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      686 Bay Street, Rm 13.9713, Suite 03-6577, 
      Toronto, ON, CA 
       (98.2 mi)

      Tara Paton practices in Toronto, Canada. Ms. Paton and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Mononucleosis, 3M Syndrome, Dentatorubral-Pallidoluysian Atrophy, and Lafora Disease.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Julie Turnbull practices in Toronto, Canada. Ms. Turnbull and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Lafora Disease, Dentatorubral-Pallidoluysian Atrophy, Epilepsy with Myoclonic-Atonic Seizures, and Myoclonic Epilepsy.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Christian Marshall practices in Toronto, Canada. Mr. Marshall and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. His top areas of expertise are Autism Spectrum Disorder, X-Linked Chondrodysplasia Punctata 2, Chondrodysplasia Punctata Syndrome, and DiGeorge Syndrome.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Sriranga Kashyap practices in Toronto, Canada. Kashyap and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Their top areas of expertise are Triple X Syndrome, Batten Disease, CLN3 Disease, and CLN1 Disease.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Susan Blaser practices in Toronto, Canada. Ms. Blaser and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Orbital Cellulitis, Oculocerebrocutaneous Syndrome, Cerebelloparenchymal Disorder 3, X-Linked Chondrodysplasia Punctata 2, and Glossectomy.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease
      Toronto, ON, CA 
       (98.2 mi)

      Lianna Kyriakopoulou practices in Toronto, Canada. Ms. Kyriakopoulou and is rated as an Experienced expert by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Batten Disease, CLN5 Disease, CLN4 Disease, and CLN3 Disease.

      Showing 1-20 of 24

      Last Updated: 06/27/2025

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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 Rochester, NY?

      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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