Leukodystrophy and Myelin Disorders Program
The Leukodystrophy and Myelin Disorders Program at Children's National Hospital is a recognized leader in providing comprehensive clinical care, diagnostic testing and the most advanced treatments for children with inherited white matter diseases, or leukodystrophies.
Our Providers
Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.
Contact Information
For appointments, please call 1-888-884-BEAR (2327) and for information, call 202-476-2120.
Choosing the Leukodystrophy and Myelin Disorders Program at Children’s National
Identifying the cause and type of a white matter disease can be challenging. To ensure that your child receives the best care and the most appropriate form of treatment, the Leukodystrophy and Myelin Disorders Program provides your child with integrated care from a team of neurologists, biochemical geneticists, pediatricians, rehabilitation physicians, genetic counselors and speech therapists.
Features of our program include:
- Expert care. Our specialists are international leaders who have pioneered leukodystrophy and myelin disorder research and treatments.
- Personalized treatment plan. We create a personalized care plan based on the genetic makeup of your child. We understand that all children are unique and require treatments that meet their unique needs.
- Clinical trials and research. Our team of researchers and clinicians are devoted to the discovery of novel variations responsible for pediatric white matter disorders and to translate these findings into clinical treatments through extensive research, clinical trials and studies.
- Ongoing care. Our team of specialists provides ongoing care throughout the diagnosis and treatment of your child’s condition.
Conditions We Treat
- Aicardi Goutières Syndrome
- Adrenoleukodystrophy, Adrenomyeloneuropathy
- Alexander Disease
Related Care Programs
In order to provide the best care for your child, providers on the Leukodystrophy and Myelin Disorder team closely collaborate with departments and specialties across Children's National.
Our Research
The Leukodystrophy and Myelin Disorders team is internationally renowned for leukodystrophies and genetic leukoencephalopathies research. Our efforts include work on the Global Leukodystrophy Initiative, hosting the Myelin Disorders Bioregistry Project and a commitment to decreasing the rate of unsolved leukodystrophies from over half to less than 10%.
Locations
Patient Stories
Ryan's StoryRyan is 17 and loves math, science, football and his sister Sonia. He also has a rare disease without a known cure. Children's National researchers are pursing answers. "I know there's a cure out there," Sonia says. "When the doctors at Children's National find it, I"ll thank them for saving my brother."
Ryan A's StoryRyan has neurodegeneration with brain iron accumulation, or NBIA. Of the different types of NBIA, he has mitochondrial-membrane protein-associated neurodegeneration, or MPAN, a disease in which a surplus of iron accumulates in the brain and causes it to deteriorate. Tuba Alam, Ryan's mom, says that despite his condition, his goal in life is to help others like him find a cure so that they can live a full life.
Emily's StoryIn 2012, Emily Rose Wagner was born in Boston, and her parents were beyond thrilled to have their second child. The first few months after Emily was born were a dream come true for the entire family.
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