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.