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 Paciorkowski, M.D.
Neurogeneticist

Marina Connolly, M.D.
Child Neurologist

Carolyn Dickinson, N.P.
Child Neurology Nurse Practitioner

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.