The 20 Best Erdheim-Chester Disease Doctors in The United States

Find the Top Erdheim-Chester Disease Experts and Specialists

Last Updated: 04/28/2026

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MediFind found 857 doctor with experience in Erdheim-Chester Disease near The United States. Of these, 730 are Experienced, 111 are Advanced, 10 are Distinguished and 6 are Elite.

Location
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857 providers found
    Elite in Erdheim-Chester Disease
    Radiology
    Elite in Erdheim-Chester Disease
    Radiology

    Mayo Clinic Hospital In Florida

    4500 San Pablo Rd S, 
    Jacksonville, FL 
    Languages Spoken:
    English

    Jason Young is a Radiologist practicing medicine in Jacksonville, Florida. Dr. Young is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 3 other conditions, according to our data. His clinical expertise encompasses Rosai-Dorfman Disease, Erdheim-Chester Disease, Interstitial Lung Disease, and Primary Lymphoma of the Brain.

    Elite in Erdheim-Chester Disease
    Elite in Erdheim-Chester Disease

    MN - Cancer Hematology

    200 1st St SW, 
    Rochester, MN 
    Languages Spoken:
    English

    Jithma Abeykoon is a Hematologist practicing medicine in Rochester, Minnesota. Dr. Abeykoon is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 14 other conditions, according to our data. His clinical expertise encompasses Waldenstrom Macroglobulinemia, Reticulohistiocytoma, Histiocytosis, Tissue Biopsy, and Bone Marrow Transplant.

    Elite in Erdheim-Chester Disease
    Elite in Erdheim-Chester Disease

    Rockefeller Outpatient Pavilion

    160 E 53rd St, 
    New York, NY 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Eli Diamond is an Oncologist practicing medicine in New York, New York. Dr. Diamond is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 22 other conditions, according to our data. His clinical expertise encompasses Erdheim-Chester Disease, Glioblastoma, Astrocytoma, Brain Tumor, and Awake Craniotomy. Dr. Diamond is currently accepting new patients.

    Learn about our expert tiers
    Elite in Erdheim-Chester Disease
    Hematology
    Elite in Erdheim-Chester Disease
    Hematology

    Mayo Clinic-Rochester

    5716 Cleveland St Ste 200, 
    Virginia Beach, VA 
    Languages Spoken:
    English

    Gaurav Goyal is a Hematologist practicing medicine in Virginia Beach, Virginia. Dr. Goyal is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 18 other conditions, according to our data. His clinical expertise encompasses Histiocytosis, Reticulohistiocytoma, Non-Langerhans-Cell Histiocytosis, Bone Marrow Transplant, and Bone Marrow Aspiration.

    Elite in Erdheim-Chester Disease
    Hematology
    Elite in Erdheim-Chester Disease
    Hematology

    MN - Cancer Hematology

    200 1st St SW, 
    Rochester, MN 
    Languages Spoken:
    English
    Offers Telehealth

    Mithun Shah is a Hematologist practicing medicine in Rochester, Minnesota. Dr. Shah is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 27 other conditions, according to our data. His clinical expertise encompasses Histiocytosis, Reticulohistiocytoma, Acute Myeloid Leukemia (AML), Bone Marrow Transplant, and Bone Marrow Aspiration.

    Elite in Erdheim-Chester Disease
    Elite in Erdheim-Chester Disease

    HealthPartners Frauenshuh Cancer Center

    3931 Louisiana Ave S, 
    Saint Louis Park, MN 
    Languages Spoken:
    English
    Offers Telehealth

    Gordon Ruan is an Oncologist practicing medicine in Saint Louis Park, Minnesota. Dr. Ruan is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 7 other conditions, according to our data. His clinical expertise encompasses Reticulohistiocytoma, Histiocytosis, Erdheim-Chester Disease, Non-Langerhans-Cell Histiocytosis, and Bone Marrow Aspiration.

    Experienced in Erdheim-Chester Disease
    Experienced in Erdheim-Chester Disease

    Penn Radiology DCR

    140 Nutt Road, 
    Phoenixville, PA 
    Languages Spoken:
    English

    . Dr. Goldberg is rated as an Experienced provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 40 other conditions, according to our data. His clinical expertise encompasses Visceromegaly, Lung Nodules, Emphysema, Chylous Ascites, and Prostatectomy. Dr. Goldberg is board certified in American Board Of Radiology.

    Experienced in Erdheim-Chester Disease
    Experienced in Erdheim-Chester Disease

    Vanderbilt Medical Group- Teleneurology

    1161 21st Ave South, A-0118 Medical Center North, 
    Nashville, TN 
    Languages Spoken:
    English
    Offers Telehealth

    . Dr. Berkman is rated as an Experienced provider by MediFind in the treatment of Erdheim-Chester Disease. She is also highly rated in 1 other condition, according to our data. Her clinical expertise encompasses Cerebelloparenchymal Disorder 3, Stroke, Erdheim-Chester Disease, and Dysarthria. Dr. Berkman is board certified in American Board Of Psychiatry & Neurology.

    Experienced in Erdheim-Chester Disease
    Hematology Oncology | Hematology | Oncology
    Experienced in Erdheim-Chester Disease
    Hematology Oncology | Hematology | Oncology

    BHMA Cancer Care- Johnson City

    1 Professional Park Dr, Ste 21, 
    Johnson City, TN 
    Languages Spoken:
    English

    . Dr. Rendo is rated as an Experienced provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 1 other condition, according to our data. His clinical expertise encompasses Light Chain Deposition Disease (LCDD), Non-Langerhans-Cell Histiocytosis, Hemophagocytic Lymphohistiocytosis, and Reticulohistiocytoma. Dr. Rendo is board certified in American Board Of Internal Medicine.

    Experienced in Erdheim-Chester Disease
    Internal Medicine
    Experienced in Erdheim-Chester Disease
    Internal Medicine

    Texas Health Internal Medicine

    Denton, TX 
    Languages Spoken:
    English

    Aitazaz Shah is a primary care provider, practicing in Internal Medicine in Denton, Texas. Dr. Shah is rated as an Experienced provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 18 other conditions, according to our data. His clinical expertise encompasses Familial Hypertension, Glucocorticoid-Remediable Aldosteronism, Hypertension, Vertebroplasty, and Bone Graft.

    Experienced in Erdheim-Chester Disease
    Family Medicine
    Experienced in Erdheim-Chester Disease
    Family Medicine

    Northeast Georgia Physicians Group Dawsonville

    108 Prominence Court, Suite 200, 
    Dawsonville, GA 
    Experience:
    40+ years
    Languages Spoken:
    English, Portuguese, Spanish
    Accepting New Patients
    Offers Telehealth

    Katia Adams is a primary care provider, practicing in Family Medicine in Dawsonville, Georgia. She has been practicing medicine for over 40 years. Dr. Adams is rated as an Experienced provider by MediFind in the treatment of Erdheim-Chester Disease. Her clinical expertise encompasses Hypertension, Familial Hypertension, Glucocorticoid-Remediable Aldosteronism, and Hypothyroidism. Dr. Adams is board certified in American Board Of Family Medicine, Family Medicine - 2002. Dr. Adams is currently accepting new patients.

    Distinguished in Erdheim-Chester Disease
    Distinguished in Erdheim-Chester Disease

    Inova Neurology - Fairfax

    8081 Innovation Park Dr, 900, 
    Fairfax, VA 
    Languages Spoken:
    English
    Offers Telehealth

    "Dr. Rahul Davé is a specialty care physician board certified in neurology at Inova Health System. He joined Inova Neurology in 2017. He specializes in the treatment of multiple sclerosis, neuromyelitis optica (NMO), optic neuritis, transverse myelitis, neuro-sarcoid, neurologic complications of rheumatologic diseases, autoimmune encephalitis, PML, inflammatory neuropathies, myasthenia gravis, paraneoplastic disorders, vasculitis and neuro-infectious diseases (including Lyme). He is the Medical Director of the interdisciplinary Inova Multiple Sclerosis and Neuro-Immunology Center, which is recognized by the Consortium of Multiple Sclerosis Centers and is also a recipient of a ""Partner"" award by the National Multiple Sclerosis Society. He lectures broadly about multiple sclerosis and related diseases, teaches students, conducts research and serves as an expert consultant for the development of novel therapeutics. Current research interests include anti-MOG syndrome and novel therapeutics for neuro-inflammatory disorders. Prior to joining Inova, Dr. Davé worked at the National Institutes of Health (NIH), where he evaluated complicated multiple sclerosis patients and participated in the Undiagnosed Diseases Program, and conducted several clinical trials and laboratory research. He continues to maintain a Special Volunteer appointment at NIH where his research focus is Erdheim-Chester Disease. Dr. Davé became interested in neurology because family members struggled with neurologic diseases. His goal is to allow his patients to lead active lives by helping them understand and treat their diseases. Having lived all over the United States of America, Dr. Davé and his wife fell in love with the Washington, DC metro region. They currently reside in Bethesda, MD. In his spare time he likes to hike, cook and garden.". Dr. Dave is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 7 other conditions, according to our data. His clinical expertise encompasses Erdheim-Chester Disease, Multiple Sclerosis (MS), Relapsing Multiple Sclerosis (RMS), and Transverse Myelitis.

    Distinguished in Erdheim-Chester Disease
    Distinguished in Erdheim-Chester Disease

    UT MD Anderson Cancer Center

    210 Ashville Ave # 408, 
    Cary, NC 
    Languages Spoken:
    English

    Filip Janku is a primary care provider, practicing in Oncologist in Cary, North Carolina. Dr. Janku is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 30 other conditions, according to our data. His clinical expertise encompasses PIK3CA-Related Overgrowth Spectrum, Colorectal Cancer, Gastrointestinal Stromal Tumor, Lung Cancer, and Tissue Biopsy.

    Distinguished in Erdheim-Chester Disease
    Distinguished in Erdheim-Chester Disease

    Clinical Cancer Center-Froedtert Hospital

    8800 W Doyne Ave, 
    Milwaukee, WI 
    Languages Spoken:
    English

    Razelle Kurzrock is an Oncologist practicing medicine in Milwaukee, Wisconsin. Dr. Kurzrock is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. She is also highly rated in 37 other conditions, according to our data. Her clinical expertise encompasses PIK3CA-Related Overgrowth Spectrum, Castleman Disease, Multicentric Castleman Disease (MCD), Lymphoid Hyperplasia, and Tissue Biopsy.

    Advanced in Erdheim-Chester Disease
    Internal Medicine
    Advanced in Erdheim-Chester Disease
    Internal Medicine

    CHI Memorial Internal Medicine Associates - Hixson Pike

    3739 Hixson Pike, 
    Chattanooga, TN 
    Languages Spoken:
    English
    Accepting New Patients

    Mario Mariani is a primary care provider, practicing in Internal Medicine in Chattanooga, Tennessee. Dr. Mariani is rated as an Advanced provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 35 other conditions, according to our data. His clinical expertise encompasses Macroamylasemia, Hypertension, Glucocorticoid-Remediable Aldosteronism, and Familial Hypertension. Dr. Mariani is currently accepting new patients.

    Distinguished in Erdheim-Chester Disease
    Distinguished in Erdheim-Chester Disease

    MN - Neuro MS

    200 1st St SW, 
    Rochester, MN 
    Languages Spoken:
    English

    William Tobin is a Neurologist practicing medicine in Rochester, Minnesota. Dr. Tobin is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 14 other conditions, according to our data. His clinical expertise encompasses Tumefactive Multiple Sclerosis, Cerebelloparenchymal Disorder 3, Multiple Sclerosis (MS), and Erdheim-Chester Disease.

    Distinguished in Erdheim-Chester Disease
    Internal Medicine
    Distinguished in Erdheim-Chester Disease
    Internal Medicine

    Worcester Internal Medicine Inc.

    416 Belmont St, 
    Worcester, MA 
    Languages Spoken:
    English

    Bogdan Nedelescu is a primary care provider, practicing in Internal Medicine in Worcester, Massachusetts. Dr. Nedelescu is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 78 other conditions, according to our data. His clinical expertise encompasses Dementia, Necrosis, Heart Failure, Endoscopy, and Hip Replacement.

    Distinguished in Erdheim-Chester Disease
    Internal Medicine
    Distinguished in Erdheim-Chester Disease
    Internal Medicine

    Mayo Clinic-Rochester

    5716 Cleveland St Ste 200, 
    Virginia Beach, VA 
    Languages Spoken:
    English
    Offers Telehealth

    Aldo Acosta is an Internal Medicine provider practicing medicine in Virginia Beach, Virginia. Dr. Acosta is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 5 other conditions, according to our data. His clinical expertise encompasses Histiocytosis, Reticulohistiocytoma, Erdheim-Chester Disease, Non-Langerhans-Cell Histiocytosis, and Bone Marrow Transplant.

    Distinguished in Erdheim-Chester Disease
    Internal Medicine
    Distinguished in Erdheim-Chester Disease
    Internal Medicine

    Mayo Clinic-Rochester

    5716 Cleveland St Ste 200, 
    Virginia Beach, VA 
    Languages Spoken:
    English
    Offers Telehealth

    Saurabh Zanwar is an Internal Medicine provider practicing medicine in Virginia Beach, Virginia. Dr. Zanwar is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 10 other conditions, according to our data. His clinical expertise encompasses Waldenstrom Macroglobulinemia, Histiocytosis, Reticulohistiocytoma, Bone Marrow Aspiration, and Bone Marrow Transplant.

    Distinguished in Erdheim-Chester Disease
    Internal Medicine
    Distinguished in Erdheim-Chester Disease
    Internal Medicine

    Parimal J. Soni MD PC

    3802 Poplar Hill Rd Ste E, 
    Chesapeake, VA 
    Languages Spoken:
    English
    Offers Telehealth

    Parimal Soni is a primary care provider, practicing in Internal Medicine in Chesapeake, Virginia. Dr. Soni is rated as a Distinguished provider by MediFind in the treatment of Erdheim-Chester Disease. He is also highly rated in 25 other conditions, according to our data. His clinical expertise encompasses Multiple Symmetric Lipomatosis, Fumarase Deficiency, Erdheim-Chester Disease, and Dihydropyrimidine Dehydrogenase Deficiency.

    Showing 1-20 of 857

    Last Updated: 04/28/2026

    What is the definition of Erdheim-Chester Disease?

    Erdheim-Chester disease is a rare type of slow-growing blood cancer called a histiocytic neoplasm, which results in overproduction of cells called histiocytes. Histiocytes normally function to destroy foreign substances and protect the body from infection. In Erdheim-Chester disease, the excess production of histiocytes (histiocytosis) leads to inflammation that can damage organs and tissues throughout the body, causing them to become thickened, dense, and scarred (fibrotic); this tissue damage may lead to organ failure.

    When should I see an Erdheim-Chester Disease doctor in The United States?

    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 an Erdheim-Chester Disease doctor in The United States?

    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 Erdheim-Chester Disease doctors in The United States?

    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 Erdheim-Chester Disease doctors in The United States?

    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 an Erdheim-Chester Disease doctor in The United States?

    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 Erdheim-Chester Disease doctor search results page. 

    Why is it important to get a second opinion from a different Erdheim-Chester 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 an Erdheim-Chester Disease doctor in The United States?

    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 Erdheim-Chester 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 Erdheim-Chester 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 Erdheim-Chester Disease doctors in The United States?

    Look for the filter feature on the left side of the Erdheim-Chester 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 an Erdheim-Chester Disease doctor that offers video calls?

    Look for the filter feature on the left-side of the Erdheim-Chester 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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