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    Last Updated: 10/30/2025

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    MediFind found 28 doctor with experience in CLN5 Disease near Massachusetts, US. Of these, 26 are Experienced and 2 are Advanced.

    Location
    LocationClose
    28 providers found
      Advanced in CLN5 Disease
      Medical Genetics | Pediatric Neurology | Pediatrics
      Advanced in CLN5 Disease
      Medical Genetics | Pediatric Neurology | Pediatrics

      Children's Hospital Pediatric Associates, Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Lance Rodan is a Medical Genetics specialist and a Pediatric Neurologist in Boston, Massachusetts. Dr. Rodan is rated as an Advanced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Hennekam Syndrome, Increased Head Circumference, Polymicrogyria, Retinopathy Pigmentary Mental Retardation, and Deep Brain Stimulation. Dr. Rodan is currently accepting new patients.

      Advanced in CLN5 Disease
      Pediatrics | Pediatric Neurology
      Advanced in CLN5 Disease
      Pediatrics | Pediatric Neurology
      300 Longwood Ave, Children's Hospital Boston, Dept Neurology, Fegan 11, 
      Boston, MA 
      Languages Spoken:
      English

      Ariane Soldatos is a Pediatrics specialist and a Pediatric Neurologist in Boston, Massachusetts. Dr. Soldatos is rated as an Advanced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Batten Disease, West Syndrome, CLN2 Disease, CLN5 Disease, and Deep Brain Stimulation.

      What does Elite, Distinguished, Advanced, Experienced mean?
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology | Pediatrics
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology | Pediatrics
      300 Longwood Ave, Fegan 11, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Janet Soul is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Soul is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Seizures, Epilepsy in Children, Absence Seizure, and Generalized Tonic-Clonic Seizure. Dr. Soul is currently accepting new patients.

      Learn about our expert tiers
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Darius Ebrahimi-Fakhari is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Ebrahimi-Fakhari is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Vici Syndrome, Chorea, Spastic Paraplegia-Epilepsy-Intellectual Disability Syndrome, and Spastic Paraplegia Type 2. Dr. Ebrahimi-Fakhari is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Christelle Moufawad-El is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Moufawad-El is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Photosensitive Epilepsy, Epilepsy in Children, Infant Epilepsy with Migrant Focal Crisis, and Seizures. Dr. Moufawad-El is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Kerri Larovere is a Pediatric Neurologist and a Pediatrics provider in Boston, Massachusetts. Dr. Larovere is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Multisystem Inflammatory Syndrome in Children (MIS-C), Infant Epilepsy with Migrant Focal Crisis, Epilepsy in Children, and Epilepsy with Myoclonic-Atonic Seizures. Dr. Larovere is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, Bch3446, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Melissa Tsuboyama is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Tsuboyama is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Seizures, Epilepsy, Epilepsy in Children, and Succinic Semialdehyde Dehydrogenase Deficiency. Dr. Tsuboyama is currently accepting new patients.

      Experienced in CLN5 Disease
      Experienced in CLN5 Disease
      55 Fruit St, Vbk 915, 
      Boston, MA 
      Languages Spoken:
      English

      Timothy Yu is a Neurologist in Boston, Massachusetts. Dr. Yu is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Periventricular Heterotopia, Schizencephaly, Achalasia Microcephaly Syndrome, and Microcephaly.

      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Alexander Rotenberg is a Pediatric Neurologist and a Pediatrics provider in Boston, Massachusetts. Dr. Rotenberg is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Seizures, Succinic Semialdehyde Dehydrogenase Deficiency, Epilepsy, and Generalized Tonic-Clonic Seizure. Dr. Rotenberg is currently accepting new patients.

      Experienced in CLN5 Disease
      Medical Genetics
      Experienced in CLN5 Disease
      Medical Genetics

      Children's Hospital Pediatric Associates, Inc

      300 Longwood Ave, Bch3446, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Olaf Bodamer is a Medical Genetics provider in Boston, Massachusetts. Dr. Bodamer is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Kabuki Syndrome, Classic Galactosemia, Niemann-Pick Disease, and Mucopolysaccharidoses (MPS). Dr. Bodamer is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, Bch3446, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Jeffrey Bolton is a Pediatric Neurologist and a Pediatrics provider in Boston, Massachusetts. Dr. Bolton is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Seizures, Epilepsy in Children, Epilepsy, and Generalized Tonic-Clonic Seizure. Dr. Bolton is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Sara Trowbridge is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Trowbridge is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are West Syndrome, Seizures, Myoclonic Epilepsy, and Memory Loss. Dr. Trowbridge is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Sleep Medicine | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Sleep Medicine | Neurology

      Child Health Foundation Of Boston Inc

      725 Albany St, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Joshua August is a Pediatric Neurologist and a Sleep Medicine provider in Boston, Massachusetts. Dr. August is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Irregular Sleep-Wake Syndrome, Periodic Limb Movement Disorder, Idiopathic Hypersomnia, and Drowsiness. Dr. August is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, Bch3446, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Stephanie Donatelli is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Donatelli is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are West Syndrome, Epilepsy, Seizures, and Epilepsy in Children. Dr. Donatelli is currently accepting new patients.

      Experienced in CLN5 Disease
      Medical Genetics | Pediatrics
      Experienced in CLN5 Disease
      Medical Genetics | Pediatrics

      Children's Hospital Pediatric Associates, Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Stephanie Sacharow is a Medical Genetics specialist and a Pediatrics provider in Boston, Massachusetts. Dr. Sacharow is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Phenylketonuria (PKU), Maternal Hyperphenylalaninemia, Cat Eye Syndrome, and Dihydropteridine Reductase Deficiency. Dr. Sacharow is currently accepting new patients.

      Experienced in CLN5 Disease
      Experienced in CLN5 Disease

      Boston University Neurology Associates Inc

      725 Albany St, Suite 7b, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients
      Offers Telehealth

      Marie-helene Saint-Hilaire is a Neurologist in Boston, Massachusetts. Dr. Saint-Hilaire is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Parkinson's Disease, Movement Disorders, Drug Induced Dyskinesia, and Meige Syndrome. Dr. Saint-Hilaire is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatrics | Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatrics | Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, Bch3446, 
      Boston, MA 
      Languages Spoken:
      English

      Anna Pinto is a Pediatrics specialist and a Pediatric Neurologist in Boston, Massachusetts. Dr. Pinto is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Sturge-Weber Syndrome, Parkes Weber Syndrome, Seizures, and Epilepsy.

      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Pediatrics | Neurology
      300 Longwood Ave, Neurology - Fegan 11, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Phillip Pearl is a Pediatric Neurologist and a Pediatrics provider in Boston, Massachusetts. Dr. Pearl is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. His top areas of expertise are Succinic Semialdehyde Dehydrogenase Deficiency, Epilepsy, Epilepsy in Children, and Seizures. Dr. Pearl is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology

      C H Neurology Foundation Inc

      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Agnieszka Kielian is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Kielian is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Seizures, Photosensitive Epilepsy, Landau-Kleffner Syndrome, and Generalized Tonic-Clonic Seizure. Dr. Kielian is currently accepting new patients.

      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      Experienced in CLN5 Disease
      Pediatric Neurology | Neurology
      300 Longwood Ave, 
      Boston, MA 
      Languages Spoken:
      English
      Accepting New Patients

      Karen Stannard is a Pediatric Neurologist and a Neurologist in Boston, Massachusetts. Dr. Stannard is rated as an Experienced provider by MediFind in the treatment of CLN5 Disease. Her top areas of expertise are Spasmus Nutans, Stereotypic Movement Disorder, Seizures, and Memory Loss. Dr. Stannard is currently accepting new patients.

      Showing 1-20 of 28

      Last Updated: 10/30/2025

      What is the definition of CLN5 Disease?

      CLN5 disease is an inherited disorder that primarily affects the nervous system. The signs and symptoms of this condition can begin anytime between childhood and early adulthood, but they typically appear around age 5. Children with CLN5 disease often have normal development until they experience the first signs of the condition, which are usually problems with movement that might seem like clumsiness, and a loss of previously acquired motor skills (developmental regression). Other features of the condition include recurrent seizures that involve uncontrollable muscle jerks (myoclonic epilepsy), difficulty coordinating movements (ataxia), vision loss, speech problems, and a decline in intellectual function. The life expectancy of people with CLN5 disease varies; affected individuals usually survive into adolescence or mid-adulthood.

      When should I see a CLN5 Disease doctor in Massachusetts, US?

      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 CLN5 Disease doctor in Massachusetts, US?

      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 CLN5 Disease doctors in Massachusetts, US?

      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 CLN5 Disease doctors in Massachusetts, US?

      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 CLN5 Disease doctor in Massachusetts, US?

      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 CLN5 Disease doctor search results page. 

      Why is it important to get a second opinion from a different CLN5 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 CLN5 Disease doctor in Massachusetts, US?

      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 CLN5 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 CLN5 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 CLN5 Disease doctors in Massachusetts, US?

      Look for the filter feature on the left side of the CLN5 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 CLN5 Disease doctor that offers video calls?

      Look for the filter feature on the left-side of the CLN5 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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