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UR Medicine / Neurology / Clinical Services / Neurofibromatosis Program
 

Neurofibromatosis Program

The University Of Rochester Medical Center offers comprehensive care for children and adults with Neurofibromatosis 1 and 2, including Schwannomatosis. Neurofibromatosis is a common disorder affecting 1 in 3,000 individuals, and can be associated with a variety of medical complications. These are genetic disorders where care for entire families is important. A care team that is present throughout one's life assures access to providers familiar with these diseases and recommendations for management of complications.

Our Team

Alex PaciorkowskiAlex Paciorkowski, M.D.
Neurogeneticist

Joy Burke Joy Burke, M.D.
Adult Neurology and Neuro-Oncology

Marina Rubin Connolly Marina Connolly, M.D.
Child Neurologist

Carolyn E. Dickinson Carolyn Dickinson, N.P.
Child Neurology Nurse Practitioner

Kelly Querfurth Minks, M.S. Kelly Minks, M.S.
Certified Genetic Counselor


Specialist Providers in Our Referral Network:

  • Dermatology

  • Developmental Pediatrics

  • Neurosurgery

  • Orthopedics

  • Ophthalmology

  • Pain Management

  • Sleep

  • Pediatric Oncology

  • Plastics 

  • Radiation Oncology

Contact information for appointments:

For pediatric patients (under 18 years of age) and affected families: 585-275-2808

For adult patients (over 18 years of age): 585-341-7500

 

We receive generous support from the Children's Tumor Foundation for our clinical care.