Riley-day syndrome

Healthcare/Doctors

How do I find a center of excellence in Riley-Day syndrome?

Patients may want to try contacting the nearest academic health care center (usually associated with a university) to find out if anyone has experience treating Riley-Day syndrome. Academic health care centers tend to have the most up to date technology and may be involved in clinical research. People can also search the American College of Medical Genetics Clinic Services Search Engine to find a genetics provider that is familiar with Riley-Day syndrome.

Another resource for finding a medical center that treats Riley-Day syndrome is the Dysautonomia Foundation, Inc.

There is also a specialized dysautonomia center in New York:

Name: Dysautonomia Center

Office Hours: 9 AM – 5 PM (Monday to Friday)

Mailing address: Dysautonomia Center

530 First Avenue, Suite 9Q

New York, NY, 10016

Phone: 212-263-7225

Fax: 646-754-9647

References
  • http://www.familialdysautonomia.org/DFI/
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What specialist doctors should I see with Riley-Day syndrome?

What specialist doctors should I see with Riley-Day syndrome?

Patients with Riley-Day syndrome will need a team of specialists to help treat them. This team may change as patients grow older and symptoms change. This team may include:

  • A neonatologist in the newborn period
  • A neurologist who specializes in disease of the brain
  • A cardiologist who specializes in disease of the heart
  • A medical geneticist who specializes in genetic disease
  • A gastroenterologist who specializes in disease of the digestive system

Other specialists may be needed depending on a patient's symptoms. People can learn more about the different symptoms and specialists needed for treating Riley-Day syndrome by visiting the Dysautonomia Foundation, Inc website.

References

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