The 20 Best Cystinosis Doctors in The United States

Find the Top Cystinosis Experts and Specialists

Last Updated: 09/26/2026

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MediFind found 92 doctor with experience in Cystinosis near The United States. Of these, 60 are Experienced, 25 are Advanced, 4 are Distinguished and 3 are Elite.

Location
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92 providers found
    Elite in Cystinosis
    Pediatric Nephrology
    Elite in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Ann & Robert H. Lurie Children's Hospital Of Chicago

    225 E Chicago Ave, 
    Chicago, IL 
    Languages Spoken:
    English, French, Italian

    Craig Langman is a Pediatric Nephrologist practicing medicine in Chicago, Illinois. Dr. Langman is rated as an Elite provider by MediFind in the treatment of Cystinosis. He is also highly rated in 8 other conditions, according to our data. His clinical expertise encompasses Cystinosis, Fanconi Bickel Syndrome, Fanconi Syndrome, Atypical Hemolytic Uremic Syndrome (aHUS), and Kidney Transplant.

    Elite in Cystinosis
    Pediatric Nephrology
    Elite in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Lucile Packard Children's Hospital Stanford

    725 Welch Rd, 
    Palo Alto, CA 
    Languages Spoken:
    English
    Offers Telehealth

    Paul Grimm is a Pediatric Nephrologist practicing medicine in Palo Alto, California. Dr. Grimm is rated as an Elite provider by MediFind in the treatment of Cystinosis. He is also highly rated in 13 other conditions, according to our data. His clinical expertise encompasses Cystinosis, Potter Syndrome, Autosomal Recessive Polycystic Kidney Disease, Kidney Transplant, and Nephrectomy.

    Experienced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Experienced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    Atrium Health Levine Children's Nephrology

    1001 Blythe Blvd., Suite C, 
    Charlotte, NC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Megan Yanik is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Charlotte, North Carolina. Dr. Yanik is rated as an Experienced provider by MediFind in the treatment of Cystinosis. Her clinical expertise encompasses Cystinosis, Posterior Urethral Valves, Nephrotic Syndrome, and Kidney Transplant. Dr. Yanik is board certified in American Board Of Pediatrics. Dr. Yanik is currently accepting new patients.

    Learn about our expert tiers
    Experienced in Cystinosis
    Pediatric Nephrology | General Surgery
    Experienced in Cystinosis
    Pediatric Nephrology | General Surgery
    Referral may be required

    MUSC Children's Health Nephrology At Summey Medical Pavilion

    2250 Mall Dr, 
    North Charleston, SC 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Katherine Twombley is a Pediatric Nephrologist and a General Surgeon practicing medicine in North Charleston, South Carolina. Dr. Twombley is rated as an Experienced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 6 other conditions, according to our data. Her clinical expertise encompasses Focal Segmental Glomerulosclerosis, Nephrotic Syndrome, Minimal Change Disease, Kidney Transplant, and Thymectomy. Dr. Twombley is currently accepting new patients.

    Experienced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Experienced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    St. Christopher's Pediatric Associates Nephrology - E. Erie Avenue

    160 E Erie Ave, 
    Philadelphia, PA 
    Languages Spoken:
    English

    Anil Mongia is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Philadelphia, Pennsylvania. Dr. Mongia is rated as an Experienced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 2 other conditions, according to our data. His clinical expertise encompasses Focal Segmental Glomerulosclerosis, Nephrotic Syndrome, Glomerulonephritis, and Posterior Urethral Valves. Dr. Mongia is board certified in American Board Of Pediatrics.

    Distinguished in Cystinosis
    Pediatric Nephrology
    Distinguished in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Texas Medical Center Wallace Tower Kidney Renal

    6701 Fannin St Fl 11, 
    Houston, TX 
    Languages Spoken:
    English
    Accepting New Patients

    Ewa Elenberg is a Pediatric Nephrologist practicing medicine in Houston, Texas. Dr. Elenberg is rated as a Distinguished provider by MediFind in the treatment of Cystinosis. She is also highly rated in 4 other conditions, according to our data. Her clinical expertise encompasses Cystinosis, Fanconi Syndrome, Fanconi Bickel Syndrome, Nephrotic Syndrome, and Kidney Transplant. Dr. Elenberg is currently accepting new patients.

    Distinguished in Cystinosis
    Pediatric Nephrology
    Distinguished in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Emory University School Of Medicine

    2015 Upper Gate Dr NE, 
    Atlanta, GA 
    Languages Spoken:
    English, Spanish
    Accepting New Patients
    Offers Telehealth

    Laurence Greenbaum is a Pediatric Nephrologist practicing medicine in Atlanta, Georgia. Dr. Greenbaum is rated as a Distinguished provider by MediFind in the treatment of Cystinosis. He is also highly rated in 2 other conditions, according to our data. His clinical expertise encompasses Cystinosis, Renal Tubular Acidosis, Atypical Hemolytic Uremic Syndrome (aHUS), and Hemolytic-Uremic Syndrome. Dr. Greenbaum is currently accepting new patients.

    Distinguished in Cystinosis
    Pediatric Nephrology
    Distinguished in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Judy L Schmidt Md/Pc

    2835 Fort Missoula Rd Ste 301, 
    Missoula, MT 
    Languages Spoken:
    English, French, German, Russian, Spanish, Ukrainian
    Accepting New Patients
    Offers Telehealth

    Daryl Okamura is a Pediatric Nephrologist practicing medicine in Missoula, Montana. Dr. Okamura is rated as a Distinguished provider by MediFind in the treatment of Cystinosis. He is also highly rated in 5 other conditions, according to our data. His clinical expertise encompasses Cystinosis, End-Stage Renal Disease (ESRD), Fanconi Syndrome, and Fanconi Bickel Syndrome. Dr. Okamura is currently accepting new patients.

    Distinguished in Cystinosis
    Pediatric Nephrology
    Distinguished in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Office

    2401 Gillham Rd Ste 1, 
    Kansas City, MO 
    Languages Spoken:
    English
    Accepting New Patients

    Bradley Warady is a Pediatric Nephrologist practicing medicine in Kansas City, Missouri. Dr. Warady is rated as a Distinguished provider by MediFind in the treatment of Cystinosis. He is also highly rated in 13 other conditions, according to our data. His clinical expertise encompasses Alport Syndrome, High Blood Pressure in Infants, Cystinosis, Kidney Transplant, and Gastrostomy. Dr. Warady is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 8 Reception B, 
    Ann Arbor, MI 
    Experience:
    17+ years
    Languages Spoken:
    English
    Accepting New Patients

    Clare Lindner is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. She has been practicing medicine for over 17 years. Dr. Lindner is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 10 other conditions, according to our data. Her clinical expertise encompasses Fanconi Bickel Syndrome, Fanconi Syndrome, Posterior Urethral Valves, and Cystinosis. Dr. Lindner is board certified in Pediatrics and Pediatric Nephrology. Dr. Lindner is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 8 Reception B, 
    Ann Arbor, MI 
    Languages Spoken:
    English
    Accepting New Patients

    David Kershaw is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. Dr. Kershaw is rated as an Advanced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 17 other conditions, according to our data. His clinical expertise encompasses Posterior Urethral Valves, Autosomal Recessive Polycystic Kidney Disease, Potter Syndrome, Alport Syndrome, and Kidney Transplant. Dr. Kershaw is currently accepting new patients.

    Advanced in Cystinosis
    Transplant Surgery | Pediatric Nephrology
    Advanced in Cystinosis
    Transplant Surgery | Pediatric Nephrology
    Referral may be required

    M Health Fairview Discovery Pediatric Specialty Clinic

    Discovery Clinic 2512, Bldg, 3rd Flr 2512 S 7th St, 
    Minneapolis, MN 
    Languages Spoken:
    English, Urdu
    Accepting New Patients

    Sarah Kizilbash is a Transplant Surgeon and a Pediatric Nephrologist practicing medicine in Minneapolis, Minnesota. Dr. Kizilbash is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 2 other conditions, according to our data. Her clinical expertise encompasses Cystinosis, Nephrotic Syndrome, Chronic Antibody-Mediated Rejection, Kidney Transplant, and Nephrectomy. Dr. Kizilbash is board certified in Pediatric Nephrology: American Board Of Pediatrics, 2018. Dr. Kizilbash is currently accepting new patients.

    Advanced in Cystinosis
    Transplant Surgery | Pediatric Nephrology
    Advanced in Cystinosis
    Transplant Surgery | Pediatric Nephrology
    Referral may be required

    M Health Fairview Pediatric Specialty Clinic Woodbury

    9680 Tamarack Road, Suite 130, 
    Woodbury, MN 
    Languages Spoken:
    English
    Accepting New Patients

    Michelle Rheault is a Transplant Surgeon and a Pediatric Nephrologist practicing medicine in Woodbury, Minnesota. Dr. Rheault is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 8 other conditions, according to our data. Her clinical expertise encompasses Alport Syndrome, Focal Segmental Glomerulosclerosis, Nephrotic Syndrome, Glomerulonephritis, and Kidney Transplant. Dr. Rheault is board certified in Pediatric Nephrology: American Board Of Pediatrics, 2005 and Pediatrics: American Board Of Pediatrics, 2002. Dr. Rheault is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology
    Advanced in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Ann & Robert H. Lurie Children's Hospital Of Chicago

    225 E Chicago Ave, 
    Chicago, IL 
    Languages Spoken:
    English

    Priya Verghese is a Pediatric Nephrologist practicing medicine in Chicago, Illinois. Dr. Verghese is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 8 other conditions, according to our data. Her clinical expertise encompasses Nephrotic Syndrome, Focal Segmental Glomerulosclerosis, Glomerulonephritis, Kidney Transplant, and Nephrectomy.

    Advanced in Cystinosis
    Pediatric Nephrology
    Advanced in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Rosenthal 4 Practice Nephrology

    111 E 210th Street, 
    Bronx, NY 
    Languages Spoken:
    English
    Accepting New Patients

    Frederick Kaskel is a Pediatric Nephrologist practicing medicine in Bronx, New York. Dr. Kaskel is rated as an Advanced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 5 other conditions, according to our data. His clinical expertise encompasses Nephrotic Syndrome, Focal Segmental Glomerulosclerosis, Minimal Change Disease, Glomerulonephritis, and Kidney Transplant. Dr. Kaskel is board certified in American Board Of Pediatrics. Dr. Kaskel is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    C. S. Mott Children's Hospital

    1540 E Hospital Dr, Floor 8 Reception B, 
    Ann Arbor, MI 
    Languages Spoken:
    English, German
    Accepting New Patients

    Matthias Wolf is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Ann Arbor, Michigan. Dr. Wolf is rated as an Advanced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 5 other conditions, according to our data. His clinical expertise encompasses Fetal Thalidomide Syndrome, Cystinosis, Fanconi Bickel Syndrome, and Fanconi Syndrome. Dr. Wolf is board certified in Pediatrics and Pediatric Nephrology. Dr. Wolf is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology
    Advanced in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Corewell Health William Beaumont University Hospital Pediatric Nephrology

    3535 West 13 Mile Road, Suite 707, 
    Royal Oak, MI 
    Languages Spoken:
    English
    Accepting New Patients

    Brooke Blazius is a Pediatric Nephrologist practicing medicine in Royal Oak, Michigan. Dr. Blazius is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 6 other conditions, according to our data. Her clinical expertise encompasses Glomerulonephritis, Autosomal Recessive Polycystic Kidney Disease, Potter Syndrome, Nephrotic Syndrome, and Kidney Transplant. Dr. Blazius is board certified in American Board Of Pediatrics. Dr. Blazius is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Advanced in Cystinosis
    Pediatric Nephrology | Pediatrics
    Referral may be required

    Cook Children's Nephrology And Dialysis Services

    1500 Cooper St, 1st Fl, 
    Fort Worth, TX 
    Languages Spoken:
    English, Spanish
    Accepting New Patients

    Robert Gillespie is a Pediatric Nephrologist and a Pediatrics provider practicing medicine in Fort Worth, Texas. Dr. Gillespie is rated as an Advanced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 2 other conditions, according to our data. His clinical expertise encompasses End-Stage Renal Disease (ESRD), Cystinosis, Nephrotic Syndrome, and Potter Syndrome. Dr. Gillespie is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology
    Advanced in Cystinosis
    Pediatric Nephrology
    Referral may be required

    Division Of Nephrology

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

    Deborah Stein is a Pediatric Nephrologist practicing medicine in Boston, Massachusetts. Dr. Stein is rated as an Advanced provider by MediFind in the treatment of Cystinosis. She is also highly rated in 11 other conditions, according to our data. Her clinical expertise encompasses Posterior Urethral Valves, Nephrotic Syndrome, Cystinosis, and Lowe Syndrome. Dr. Stein is currently accepting new patients.

    Advanced in Cystinosis
    Pediatric Nephrology
    Advanced in Cystinosis
    Pediatric Nephrology
    Referral may be required

    UVA Hospital

    1215 Lee St, 
    Charlottesville, VA 
    Languages Spoken:
    English

    Robert Chevalier is a Pediatric Nephrologist practicing medicine in Charlottesville, Virginia. Dr. Chevalier is rated as an Advanced provider by MediFind in the treatment of Cystinosis. He is also highly rated in 1 other condition, according to our data. His clinical expertise encompasses Cystinosis, High Blood Pressure in Infants, and Minimal Change Disease.

    Showing 1-20 of 92

    Last Updated: 09/26/2026

    What is the definition of Cystinosis?

    Cystinosis is a condition characterized by accumulation of the amino acid cystine (a building block of proteins) within cells. Excess cystine damages cells and often forms crystals that can build up and cause problems in many organs and tissues. The kidneys and eyes are especially vulnerable to damage; the muscles, thyroid, pancreas, and testes may also be affected.

    When should I see a Cystinosis 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 a Cystinosis 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 Cystinosis 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 Cystinosis 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 a Cystinosis 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 Cystinosis doctor search results page. 

    Why is it important to get a second opinion from a different Cystinosis 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 Cystinosis 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 Cystinosis 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 Cystinosis 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 Cystinosis doctors in The United States?

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

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