The 20 Best Leukodystrophy Doctors in The United States

Find the Top Leukodystrophy Experts and Specialists

Last Updated: 04/28/2026

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MediFind found 459 doctor with experience in Leukodystrophy near The United States. Of these, 355 are Experienced, 87 are Advanced, 10 are Distinguished and 6 are Elite.

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459 providers found
    Elite in Leukodystrophy
    Elite in Leukodystrophy

    Pediatric Nephrology - University Of Utah Hospital

    50 N Medical Dr, 
    Salt Lake City, UT 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Joshua Bonkowsky is a Neurologist practicing medicine in Salt Lake City, Utah. Dr. Bonkowsky is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 14 other conditions, according to our data. His clinical expertise encompasses CACH Syndrome, Adrenoleukodystrophy (ALD), Leukodystrophy, Krabbe Disease, and Gastrostomy. Dr. Bonkowsky is board certified in American Board Of Psychiatry And Neurology. Dr. Bonkowsky is currently accepting new patients.

    Elite in Leukodystrophy
    Pediatric Neurology | Neurology
    Elite in Leukodystrophy
    Pediatric Neurology | Neurology

    Childrens Health Care Associates Inc

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

    Adeline Vanderver is a Pediatric Neurologist and a Neurologist practicing medicine in Philadelphia, Pennsylvania. Dr. Vanderver is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 24 other conditions, according to our data. Her clinical expertise encompasses Aicardi-Goutieres Syndrome, Leukodystrophy, CACH Syndrome, Pol 3-Related Leukodystrophy, and Gastrostomy.

    Elite in Leukodystrophy
    Pediatric Neurology
    Elite in Leukodystrophy
    Pediatric Neurology

    Massachusetts General Hospital

    55 Fruit St, 
    Boston, MA 
    Languages Spoken:
    English

    Florian Eichler is a Pediatric Neurologist practicing medicine in Boston, Massachusetts. Dr. Eichler is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 25 other conditions, according to our data. His clinical expertise encompasses Adrenoleukodystrophy (ALD), CACH Syndrome, Tay-Sachs Disease, Gangliosidosis, and Gastrostomy.

    Learn about our expert tiers
    Elite in Leukodystrophy
    Hematology | Oncology
    Elite in Leukodystrophy
    Hematology | Oncology

    Boston Children's Hospital

    300 Longwood Ave, 
    Boston, MA 
    Languages Spoken:
    English

    Alessandra Biffi is a Hematologist and an Oncologist practicing medicine in Boston, Massachusetts. Dr. Biffi is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 17 other conditions, according to our data. Her clinical expertise encompasses Metachromatic Leukodystrophy, Leukodystrophy, Hemoglobinopathy, Bone Marrow Transplant, and Splenectomy.

    Elite in Leukodystrophy
    Pediatric Neurology
    Elite in Leukodystrophy
    Pediatric Neurology

    Center For Advanced Pediatrics-General And Thoracic Surgery

    2174 N Druid Hills Rd NE, 
    Atlanta, GA 
    Languages Spoken:
    English
    Offers Telehealth

    Stephanie Keller is a Pediatric Neurologist practicing medicine in Atlanta, Georgia. Dr. Keller is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 5 other conditions, according to our data. Her clinical expertise encompasses Leukodystrophy, CACH Syndrome, Metachromatic Leukodystrophy, Pelizaeus-Merzbacher Disease, and Gastrostomy.

    Elite in Leukodystrophy
    Pediatric Neurology
    Elite in Leukodystrophy
    Pediatric Neurology

    Office

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

    Laura Adang is a Pediatric Neurologist practicing medicine in Philadelphia, Pennsylvania. Dr. Adang is rated as an Elite provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 10 other conditions, according to our data. Her clinical expertise encompasses Aicardi-Goutieres Syndrome, Metachromatic Leukodystrophy, Leukodystrophy, CACH Syndrome, and Gastrostomy.

    Advanced in Leukodystrophy
    Advanced in Leukodystrophy

    Vanderbilt Medical Group- Teleneurology

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

    . Dr. Brown is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 36 other conditions, according to our data. Her clinical expertise encompasses Movement Disorders, Parkinson's Disease, Huntington Disease, and Hereditary Ataxia. Dr. Brown is board certified in  .

    Distinguished in Leukodystrophy
    Distinguished in Leukodystrophy

    Texas Neurology, P.A.

    6080 N Central Expy, Ste 100, 
    Dallas, TX 
    Languages Spoken:
    English, French
    Offers Telehealth

    Dr. Schiffmann is a renowned expert on neurometabolic diseases. He earned his medical degree from the University of Liège, Belgium and a Master of Health Sciences in Clinical Research from Duke University. He is board-certified in Neurology with a Special Qualification in Child Neurology and is a Fellow of the American Academy of Neurology. Dr. Schiffmann was a lead researcher at the United States National Institutes of Health in Bethesda, Maryland for over 17 years (1991-2007) and then the Director of the Institute of Metabolic Disease at the Baylor Scott & White Research Institute in Dallas, Texas, 2008-2019. Dr. Schiffmann is a Professor in the Department of Internal Medicine, Texas Christian University and a Clinical Professor, Texas A&M University Medical School College of Medicine. He is also a Senior Vice President for Clinical Research at 4D Molecular Therapeutics. Dr. Schiffmann has been performing pre-clinical and clinical research on lysosomal storage diseases since 1991 with a special focus on the natural history, pathogenesis and therapy of Fabry disease, Gaucher disease and the leukodystrophies. One of his particular interests and areas of expertise is to address patients with undiagnosed neurological diseases. Dr. Schiffmann has published 276 peer-reviewed research articles and over 15 book chapters. Dr. Schiffmann is rated as a Distinguished provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 10 other conditions, according to our data. His clinical expertise encompasses Gaucher Disease Type 3, Fabry Disease, Gaucher Disease, and Leukodystrophy. Dr. Schiffmann is board certified in Neurology With Special Qualification In Child Neurology- American Board Of Psychiatry And Neurology/Neurology With Special Qualification In Child Neurology and Neurology With Special Qualification In Child Neurology- American Board Of Psychiatry And Neurology.

    Distinguished in Leukodystrophy
    Hematology | Oncology
    Distinguished in Leukodystrophy
    Hematology | Oncology

    University Of Minnesota Masonic Children's Hospital

    420 Delaware St SE, 
    Minneapolis, MN 
    Languages Spoken:
    English

    Paul Orchard is a Hematologist and an Oncologist practicing medicine in Minneapolis, Minnesota. Dr. Orchard is rated as a Distinguished provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 17 other conditions, according to our data. His clinical expertise encompasses Adrenoleukodystrophy (ALD), Mucopolysaccharidosis Type 1 (MPS I, Hurler Syndrome), Mucopolysaccharidoses (MPS), Bone Marrow Transplant, and Osteotomy. Dr. Orchard is board certified in Pediatrics.

    Advanced in Leukodystrophy
    Advanced in Leukodystrophy

    Corewell Health Advanced Primary Care - Alpine

    2332 Alpine Avenue Northwest, 
    Grand Rapids, MI 
    Experience:
    27+ years
    Languages Spoken:
    English
    Accepting New Patients

    Christopher Barnes is a primary care provider, practicing in Geriatrics in Grand Rapids, Michigan. He has been practicing medicine for over 27 years. Dr. Barnes is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 12 other conditions, according to our data. His clinical expertise encompasses Alexander Disease, Canavan Disease, Farber Lipogranulomatosis, and Pelizaeus-Merzbacher Disease. Dr. Barnes is board certified in American Board Of Family Medicine. Dr. Barnes is currently accepting new patients.

    Advanced in Leukodystrophy
    Pediatrics | Medical Genetics
    Advanced in Leukodystrophy
    Pediatrics | Medical Genetics

    Rubenstein Child Health Building

    Baltimore, MD 
    Languages Spoken:
    English

    Dr. Gerald Raymond is a clinical geneticist and neurologist at Johns Hopkins where he is also a professor of genetic medicine and neurology. He obtained his MD at the University of Connecticut and was trained in Pediatrics at Johns Hopkins Hospital and Neurology at the Mass. General Hospital. He received additional training in developmental neuropathology at the Universite Catholique de Louvain in Belgium and clinical genetics at the Harvard Program. Dr. Raymond’s research has been at the overlap of genetics and neurology with specific focus on peroxisomal disorders including adrenoleukodystrophy. He has been actively involved in newborn screening for ALD and in developing clinical follow-up programs. He has extensive experience in clinical management of neurogenetic issues including peroxisomal and lysosomal disorders. He presently serves as the Director of the Lysosomal Storage Disease program in the department of Genetic Medicine. Dr. Raymond is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 21 other conditions, according to our data. His clinical expertise encompasses Adrenoleukodystrophy (ALD), Metachromatic Leukodystrophy, Farber Lipogranulomatosis, and CACH Syndrome. Dr. Raymond is board certified in American Board Of Medical Genetics And Genomics and American Board Of Psychiatry And Neurology.

    Advanced in Leukodystrophy
    Advanced in Leukodystrophy

    University Of Pittsburgh Physicians, Department Of Neurology

    3471 5th Avenue, Suite 810, 
    Pittsburgh, PA 
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Mary A. O'Neal, MD, specializes in neurology and is board-certified in neurology by the American Board of Psychiatry and Neurology. Dr. O'Neal completed her fellowship and residency at Boston University Medical Center and medical degree at Oregon Health & Science University. Dr. O'neal is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 16 other conditions, according to our data. Her clinical expertise encompasses Migraine with Brainstem Aura, Conversion Disorder, Migraine, and Headache. Dr. O'neal is board certified in American Board Of Psychiatry And Neurology. Dr. O'neal is currently accepting new patients.

    Advanced in Leukodystrophy
    Advanced in Leukodystrophy

    Duke Children's Health Center Bone Marrow Transplant Clinic

    2301 Erwin Rd, 
    Durham, NC 
    Experience:
    50+ years
    Languages Spoken:
    English
    Offers Telehealth

    I’m a pediatric blood and bone marrow transplant specialist. I see patients from all over the world, many of whom have very rare diseases. I take care of patients with leukodystrophies, leukemias and other blood disorders that are resistant to standard treatment, and children with brain injuries like cerebral palsy. It’s rewarding to make a difference when treating challenging diseases. I’ve been fortunate over my career to be able to develop new treatments in the laboratory that I take into the clinic to help patients. In fact, here at Duke I was involved in the first cord-blood transplant anywhere in the world. When meeting with patients, I focus on making their experience more than just the medicine. We have a family support program for things beyond medical needs, which is especially helpful for families that are far from home. Outside of work, I like to knit, bike and spend time with my family. Dr. Kurtzberg is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 5 other conditions, according to our data. Her clinical expertise encompasses Metachromatic Leukodystrophy, Graft Versus Host Disease (GvHD), Leukodystrophy, Congenital Athymia, and Bone Marrow Transplant. Dr. Kurtzberg is board certified in American Board Of Pediatrics, General Pediatrics and American Board Of Pediatrics, Pediatric Hematology-Oncology.

    Advanced in Leukodystrophy
    Pediatric Neurology
    Advanced in Leukodystrophy
    Pediatric Neurology

    Cleveland Clinic Main Campus

    9500 Euclid Avenue, 
    Cleveland, OH 
    Experience:
    32+ years
    Languages Spoken:
    English
    Offers Telehealth

    Sumit Parikh is a Pediatric Neurologist practicing medicine in Cleveland, Ohio. He has been practicing medicine for over 32 years. Dr. Parikh is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 168 other conditions, according to our data. His clinical expertise encompasses Kearns-Sayre Syndrome, Maternally Inherited Leigh Syndrome, Leigh Syndrome, and MELAS Syndrome. Dr. Parikh is board certified in American Board Of Psychiatry And Neurology, 2006.

    Advanced in Leukodystrophy
    Neurology
    Advanced in Leukodystrophy
    Neurology

    Cleveland Clinic Main Campus

    1950 East 89th Street, 
    Cleveland, OH 
    Experience:
    38+ years
    Languages Spoken:
    English
    Offers Telehealth

    Mary Rensel is a Neurologist practicing medicine in Cleveland, Ohio. She has been practicing medicine for over 38 years. Dr. Rensel is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 13 other conditions, according to our data. Her clinical expertise encompasses Multiple Sclerosis (MS), Relapsing Multiple Sclerosis (RMS), Transverse Myelitis, and Neuromyelitis Optica. Dr. Rensel is board certified in American Board Of Psychiatry And Neurology, 1997.

    Advanced in Leukodystrophy
    Physiatry
    Advanced in Leukodystrophy
    Physiatry

    Avon - Richard E. Jacobs Health Center

    33100 Cleveland Clinic Boulevard, 
    Avon, OH 
    Experience:
    33+ years
    Languages Spoken:
    English
    Offers Telehealth

    Keith Mckee is a Physiatrist practicing medicine in Avon, Ohio. He has been practicing medicine for over 33 years. Dr. Mckee is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 36 other conditions, according to our data. His clinical expertise encompasses Spastic Paraplegia Type 2, Troyer Syndrome, Spastic Paraplegia-Epilepsy-Intellectual Disability Syndrome, and Spastic Paraplegia Type 5A.

    Advanced in Leukodystrophy
    Pediatric Neurology
    Advanced in Leukodystrophy
    Pediatric Neurology

    Kennedy Krieger Institute

    707 North Broadway, Neurology Department, Neurology Department, 
    Baltimore, MD 
    Languages Spoken:
    English, Arabic, Farsi, German

    Dr. Fatemi received his medical degree from the Medical University of Vienna, Austria in 1999. After graduation, he served as a researcher and lecturer at the Institute for Medical Chemistry in Vienna and at the Department of Pediatrics at the Vienna General Hospital. He then moved to the United States to pursue a postdoctoral fellowship in neurogenetics and neuroimaging at Johns Hopkins University School of Medicine in 2001. During this initial period, Dr. Fatemi collaborated with a team of scientists and developed new imaging methods in patients with leukodystrophies (rare genetic diseases that affect the brain's white matter) and coordinated an internet-2 based imaging network for these diseases. He then left Kennedy Krieger Institute to train in general pediatrics and then completed a child neurology residency at the Massachusetts General Hospital, an affiliate of Harvard Medical School. Dr. Fatemi returned to the Kennedy Krieger Institute in 2008 as faculty. He is a member of the Child Neurology Society, the International Child Neurology Association, the Society for Neuroscience, the American Academy of Neurology and the International Society for Magnetic Resonance in Medicine. He has served as ad hoc reviewer for the Journals Child Development and American Journal of Neuroradiology. Dr. Fatemi is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 8 other conditions, according to our data. His clinical expertise encompasses Adrenoleukodystrophy (ALD), CACH Syndrome, Canavan Disease, and Pelizaeus-Merzbacher Disease. Dr. Fatemi is board certified in American Board Of Psychiatry And Neurology.

    Advanced in Leukodystrophy
    Advanced in Leukodystrophy

    Landon Center On Aging

    3599 Rainbow Boulevard, 
    Kansas City, KS 
    Experience:
    44+ years
    Languages Spoken:
    English
    Accepting New Patients
    Offers Telehealth

    Richard Dubinsky is a Neurologist practicing medicine in Kansas City, Kansas. He has been practicing medicine for over 44 years. Dr. Dubinsky is rated as an Advanced provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 47 other conditions, according to our data. His clinical expertise encompasses Huntington Disease, Drug Induced Dyskinesia, Mcleod Neuroacanthocytosis Syndrome, and Tardive Dyskinesia. Dr. Dubinsky is board certified in American Board Of Psychiatry And Neurology, Clinical Neurophysiology - 1992 , American Board Of Electrodiagnostic Medicine, - - 1991 , and American Board Of Psychiatry And Neurology, Neurology - 1988. Dr. Dubinsky is currently accepting new patients.

    Distinguished in Leukodystrophy
    Pediatric Neurology
    Distinguished in Leukodystrophy
    Pediatric Neurology

    Office

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

    Amy Waldman is a Pediatric Neurologist practicing medicine in Philadelphia, Pennsylvania. Dr. Waldman is rated as a Distinguished provider by MediFind in the treatment of Leukodystrophy. She is also highly rated in 15 other conditions, according to our data. Her clinical expertise encompasses CACH Syndrome, Leukodystrophy, Multiple Sclerosis (MS), Optic Neuritis, and Gastrostomy.

    Distinguished in Leukodystrophy
    Family Medicine
    Distinguished in Leukodystrophy
    Family Medicine

    University Of Illinois Hospital

    1331 W 75th St, 
    Naperville, IL 
    Languages Spoken:
    English

    Masahito Jimbo is a primary care provider, practicing in Family Medicine in Naperville, Illinois. Dr. Jimbo is rated as a Distinguished provider by MediFind in the treatment of Leukodystrophy. He is also highly rated in 9 other conditions, according to our data. His clinical expertise encompasses Leukodystrophy, Alexander Disease, CACH Syndrome, and Canavan Disease.

    Showing 1-20 of 459

    Last Updated: 04/28/2026

    What is the definition of Leukodystrophy?

    A Leukodystrophy is a type of rare genetic disorder that affects the brain, spinal cord, and other nerves in the body. It is caused by destruction of the white matter of the brain. The white matter degrades due to defects of the myelin, which is a fatty covering that insulates nerves in the brain. Myelin is needed to protect the nerves and the nerves can't function normally without it. These disorders are progressive, meaning they tend to get worse with time. The leukodystrophies are a group of disorders caused by spelling mistakes in the genes involved in making myelin. Specific leukodystrophies include metachromatic Leukodystrophy, Krabbe Leukodystrophy, X-linked adrenoLeukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, and Alexander disease. The most common symptom of a Leukodystrophy is a decline in functioning of an infant or child who previously appeared healthy. This gradual loss may be seen with issues in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior.

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

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

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

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