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UR Medicine / Neurology / UR Leukodystrophy Care Center / Referrals and Appointments

Referrals and Appointments

  • Healthcare Providers seeking an urgent referral concerning a child in their care should call our office at 585-275-2808 and request to speak with either Elaine Philipson, PNP or Dr. Robert Thompson Stone. If for any reason they are unavailable the referring physician should request to speak with the on-call attending.  For non-urgent referrals of children to our Leukodystrophy Care Center,  providers may fax referral information to our office at 585-275-3683. Please note on the referral that the concern is for a leukodystrophy or white matter disorder.
  • Patients and Families of children diagnosed with a leukodystrophy who would like to be followed in our Leukodystrophy Care Center can request a referral from their pediatrician and have their information faxed to our office at 585-275-3683. In addition, the patient or family may call our office at 585-275-2808 to let us know that a referral is being requested so we may follow-up in a timely manner.
  • What To Expect:  Children diagnosed with a leukodystrophy are generally followed in our center on quarterly basis for disease monitoring, symptom management and anticipatory care.  We seek to coordinate appointments with other specialty providers, especially for those traveling from out of town,  to minimize trips and loss of work and school time.  Leukodystrophy patients are assigned to the child neurologist and the nurse practitioner as the primary care team and will see one or both of them at each follow up clinic appointment.
  • Clinic Location:  Leukodystrophy clinic is held at the outpatient clinic building located at  200 East River Road, Rochester, NY, 14623. This location was specifically designed to be easily accessible and safe for children with special needs.  The clinic is on the 3rd Floor with elevator access.
  • Directions to Clinic Appointment:   200 East River Road, Rochester, NY 14623
  • From Syracuse and the East
    • Take NYS Thruway (I-90) to Exit 46
    • Merge onto I-390 North
    • Take the NY-15A/East Henrietta Rd./NY-15 West Henrietta Rd exit, Exit 16
    • STAY STRAIGHT to go onto East River Road
    • 200 East River Road is on the left
  • From the South
    • Take I-86 West/NY-17 West/Southern Tier Expressway West to I-390 North toward Rochester/Buffalo
    • Take the NY-15A/East Henrietta Rd./NY-15 West Henrietta Rd exit, Exit 16
    • STAY STRAIGHT to go onto East River Road
    • 200 East River Road is on the left
  • From Buffalo and the West
    • Take NYS Thruway (I-90) to Exit 46
    • Merge onto I-390 North
    • Take the NY-15A/East Henrietta Rd./NY-15 West Henrietta Rd exit, Exit 16
    • STAY STRAIGHT to go onto East River Road
    • 200 East River Road is on the left

Contact Information:

Office address:  

Leukodystrophy Care Center
Division of Child Neurology
601 Elmwood Ave , Box 631
Rochester, NY  14642
Phone: 585- 275-2808
Fax 585-275- 3683
Email: leukodystrophyclinic@urmc.rochester.edu