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    Last Updated: 10/30/2025

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    MediFind found 4 doctor with experience in Danon Disease near Rhode Island, US. Of these, 4 are Experienced.

    Location
    LocationClose
    4 providers found
      Experienced in Danon Disease
      Hematology Oncology | Hematology | Oncology
      Experienced in Danon Disease
      Hematology Oncology | Hematology | Oncology
      593 Eddy St, 
      Providence, RI 
      Languages Spoken:
      English

      Robert Sokolic is a Hematologist Oncology specialist and a Hematologist in Providence, Rhode Island. Dr. Sokolic is rated as an Experienced provider by MediFind in the treatment of Danon Disease. His top areas of expertise are Severe Combined Immunodeficiency (SCID), Adenosine Deaminase Deficiency, Chronic B-Cell Leukemia (CBCL), Sickle Cell Disease, and Bone Marrow Transplant.

      Experienced in Danon Disease
      Medical Genetics | Pediatrics
      Experienced in Danon Disease
      Medical Genetics | Pediatrics
      593 Eddy St, 
      Providence, RI 
      Languages Spoken:
      English

      Lauren Massingham is a Medical Genetics specialist and a Pediatrics provider in Providence, Rhode Island. Dr. Massingham is rated as an Experienced provider by MediFind in the treatment of Danon Disease. Her top areas of expertise are Hypotonia, Noonan Syndrome, Thanatophoric Dysplasia, and Lysosomal Acid Lipase Deficiency.

      What does Elite, Distinguished, Advanced, Experienced mean?
      Experienced in Danon Disease
      Hematology Oncology | Hematology | Oncology
      Experienced in Danon Disease
      Hematology Oncology | Hematology | Oncology

      Rhode Island Hospital

      593 Eddy St, Apc 138, 
      Providence, RI 
      Languages Spoken:
      English
      Offers Telehealth

      John Reagan is a Hematologist Oncology specialist and a Hematologist in Providence, Rhode Island. Dr. Reagan is rated as an Experienced provider by MediFind in the treatment of Danon Disease. His top areas of expertise are Acute Myeloid Leukemia (AML), Multiple Myeloma, Relapsed Refractory Multiple Myeloma (RRMM), Acute Myeloblastic Leukemia without Maturation, and Bone Marrow Aspiration.

      Learn about our expert tiers
      Experienced in Danon Disease
      Internal Medicine
      Experienced in Danon Disease
      Internal Medicine
      1 Commerce St, 
      Lincoln, RI 
      Languages Spoken:
      English
      Offers Telehealth

      Rex Appenfeller is a primary care provider, practicing in Internal Medicine in Lincoln, Rhode Island. Dr. Appenfeller is rated as an Experienced provider by MediFind in the treatment of Danon Disease. His top areas of expertise are Sitosterolemia, Familial Hypertension, Glucocorticoid-Remediable Aldosteronism, and Hypertension.

      Showing 1-4 of 4

      Last Updated: 10/30/2025

      What is the definition of Danon Disease?

      Danon disease is a condition characterized by weakening of the heart muscle (cardiomyopathy); weakening of the muscles used for movement, called skeletal muscles (myopathy); and intellectual disabilities. People with Danon disease may develop the condition at different ages. Signs and symptoms of this condition appear about 15 years earlier in males than in females. Males first experience health problems in childhood or adolescence; without treatment, these individuals typically live into early adulthood. Females start experiencing health problems in early adulthood and typically survive into mid-adulthood without treatment.

      When should I see a Danon Disease doctor in Rhode Island, 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 Danon Disease doctor in Rhode Island, 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 Danon Disease doctors in Rhode Island, 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 Danon Disease doctors in Rhode Island, 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 Danon Disease doctor in Rhode Island, 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 Danon Disease doctor search results page. 

      Why is it important to get a second opinion from a different Danon 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 Danon Disease doctor in Rhode Island, 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 Danon 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 Danon 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 Danon Disease doctors in Rhode Island, US?

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

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