Familial Dysautonomia

At the Dysautonomia Center, our physicians, researchers, and nurses work together to treat children and adults who have familial dysautonomia. Children with familial dysautonomia receive care at the Dysautonomia Center through Hassenfeld Children’s Hospital at NYU Langone.

This rare inherited condition, also known as Riley-Day syndrome, affects the development of autonomic and sensory nerves. Familial dysautonomia disrupts normal function of the senses, such as touch and balance. It also interferes with the body’s ability to control “automatic” functions, such as heart rate, blood pressure, and breathing.

Many children born with the condition have swallowing and breathing problems. People who have familial dysautonomia may develop severe respiratory infections, dangerous swings in blood pressure, orthopedic conditions such as scoliosis, and breathing disorders such as sleep apnea.

The Dysautonomia Center is one of two medical centers worldwide that offers complete care for children and adults with familial dysautonomia. Our doctors work closely with pulmonologists at the Pediatric Aerodigestive Center, part of Hassenfeld Children’s Hospital, as well as sleep experts, intensive care specialists, and other experts, as needed.

Our doctors also have a collaborative research program that conducts clinical trials of new treatments for people who have familial dysautonomia.