Patient Resources

Many genetic disorders are exceedingly rare. The Division of Genetics organizes events and sponsors support groups to help patients with the rarest metabolic disorders.

  • An annual picnic is held for metabolic disorders patients featuring a recipe exchange and dishes appropriate to the metabolic patient's diet.
  • We also sponsor a support group for families of patients with inborn errors of metabolism, formed in 1996. For information about this group, click here.
  • More information on rare disorders may be found at the National Organization for Rare Disorders (NORD) site:


Stony Brook Children's Services is offering Telehealth services which will allow our patients to receive our high-quality care from the safety and privacy of their home.

To see if your pediatric needs can be met virtually, please call Stony Brook Children's Service at (631) 444-KIDS.

If you have already booked a Telehealth visit and have questions about connecting to Microsoft Teams for your visit, please call one of our representatives at (631) 638-0597 Monday through Friday from 8 am to 6 pm. They will be happy to assist you. If you require support outside of these hours, please visit

Cómo unirse a su visita médica de telesalud de Stony Brook con la aplicación Microsoft Teams