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    Last Updated: 06/27/2025

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    MediFind found 5 doctor with experience in CLN1 Disease near Pennsylvania, US. Of these, 5 are Experienced.

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    LocationClose
    5 providers found
      Experienced in CLN1 Disease
      Pediatrics | Medical Genetics
      Experienced in CLN1 Disease
      Pediatrics | Medical Genetics
      34th & Civic Center Boulevard, 9nw55, Chop-pediatrics/medical Genetics Residency Program, 
      Philadelphia, PA 
      Languages Spoken:
      English

      Rebecca Ahrens-Nicklas is a Pediatrics specialist and a Medical Genetics provider in Philadelphia, Pennsylvania. Dr. Ahrens-Nicklas and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Multiple Sulfatase Deficiency, Chondrodysplasia Punctata with Steroid Sulfatase Deficiency, Inborn Amino Acid Metabolism Disorder, and Cardiomyopathic Lentiginosis.

      Experienced in CLN1 Disease
      Experienced in CLN1 Disease

      Wellspan Medical Group

      228 St Charles Way, Wellspan Neurology, 
      York, PA 
      Experience:
      16+ years
      Languages Spoken:
      English
      Offers Telehealth

      Tara Dutta is a Neurologist in York, Pennsylvania. Dr. Dutta has been practicing medicine for over 16 years and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Stroke, Transient Ischemic Attack (TIA), Seizures, Brain Abscess, and Gastrostomy.

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

      University Of Pittsburgh Physicians

      12680 Perry Hwy, Fl 2, 
      Wexford, PA 
      Languages Spoken:
      English

      Ying Sun is a Neurologist in Wexford, Pennsylvania. Dr. Sun and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Farber Lipogranulomatosis, Gaucher Disease, Gaucher Disease Type 3, and Restless Legs Syndrome.

      Learn about our expert tiers
      Experienced in CLN1 Disease
      Medical Genetics | Pediatrics
      Experienced in CLN1 Disease
      Medical Genetics | Pediatrics

      Childrens Health Care Associates Inc

      3401 Civic Ctr Blvd, 
      Philadelphia, PA 
      Languages Spoken:
      English

      Marni Falk is a Medical Genetics specialist and a Pediatrics provider in Philadelphia, Pennsylvania. Dr. Falk and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Her top areas of expertise are Leigh Syndrome, Kearns-Sayre Syndrome, Progressive External Ophthalmoplegia, Dihydrolipoamide Dehydrogenase Deficiency, and Spinal Fusion.

      Experienced in CLN1 Disease
      Medical Genetics
      Experienced in CLN1 Disease
      Medical Genetics
      3401 Civic Center Blvd, Division Of Medical Genetics And Genomics, 
      Philadelphia, PA 
      Languages Spoken:
      English

      Xinying Hong is a Medical Genetics provider in Philadelphia, Pennsylvania. Dr. Hong and is rated as an Experienced provider by MediFind in the treatment of CLN1 Disease. Their top areas of expertise are Krabbe Disease, Leukodystrophy, Mucopolysaccharidoses (MPS), and Mucolipidosis Type 4.

      Showing 1-5 of 5

      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 in Pennsylvania, 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 CLN1 Disease doctor in Pennsylvania, 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 CLN1 Disease doctors in Pennsylvania, 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 CLN1 Disease doctors in Pennsylvania, 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 CLN1 Disease doctor in Pennsylvania, 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 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 Pennsylvania, 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 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 Pennsylvania, US?

      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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