Neurogenetics and Rare Disease Clinic

​​Pediatric neurogenetics is a subspecialty of pediatric neurology care. Neurogenetics focuses on diseases of the brain and nervous system caused by inherited or genetic traits. Some children show signs of neurological conditions at birth, while others will not begin experiencing symptoms until later in life.

In the United States, rare diseases are defined as conditions that affect one in 1,500 individuals or less at any given time. These diseases often affect multiple organs, have hard-to-diagnose symptoms and involve complicated evaluations. That's why patients, families and their physicians turn to the Boys Town Rare Disease Clinic – for holistic care and the hope of a cure. 

We understand the fear, sadness and stress patients and their families experience when facing a mystery illness. At Boys Town Hospital, you will find the right support, the right specialists and the right care.         

Conditions We Treat

Our clinic treats a wide range of rare diseases and conditions that include:   

  • Brain Malformations
  • Congenital Disorders
  • Genetic Epilepsy
  • Genetic and Inherited Ataxia
  • Genetic Syndromes
  • Leukodystrophies/White Matter Disorders of the Brain
  • Lysosomal Storage Disorders
  • Metabolic Disorders
  • Mitochondrial Disorders
  • Muscular Dystrophy
  • Neurofibromatosis
  • Spinal Muscular Atrophy

Testing and Diagnosis

We use a variety of testing and diagnostic tools to find answers and bring better health to patients living with rare conditions. Our comprehensive evaluations can involve:         

  • Blood Tests
  • Prenatal Tests
  • EEG Tests
  • MRI Imaging
  • MR Spectroscopy
  • Genetic Testing
  • Genetic Counseling

Why Choose Boys Town Neurogenetics and Rare Disease Clinic?

Dinesh Lulla, M.D., and Isabella Herman, M.D., Ph.D., are pediatric neurologists who specialize in neurogenetic conditions and rare diseases. Here, children will have a team of pediatric neurologists, genetic counselors, a social worker, a dietitian, a case manager and child life specialists. Dr. Lulla, Dr. Herman and their team work tirelessly to advance the care and management of all those living with rare diseases and undiagnosed illnesses.

“I take a lot of pride being a rare disease doctor and taking care of kids with genetic and rare disease conditions. I want to do everything in my capacity to take care of children and help them heal." - Dinesh Lulla, M.D., Pediatric Neurogenetics

“It is an extremely exciting time in neurogenetics. Being at the forefront of new treatments for some rare neurogenetic diseases and bringing them to my patients is my passion." - Isabella Herman, M.D., Ph.D., Pediatric Neurogenetics


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