The NF Clinic at Children’s Hospital of Pittsburgh of UPMC is staffed with Dr. Amy Goldstein, Pediatric Neurology and Dr. Kathy Gardner, Neurology as Co-Coordinators.
An experienced nurse practitioner, Beth Heuer, CRNP, is also on staff.
The clinic is part of the Neurofibromatosis Clinic Network (NFCN) of the Children’s Tumor Foundation (CTF).
Individuals and families may be evaluated by NF Clinic health care professionals. Appointments may be made by calling (412) 692-5520, and inquiring about the NF Clinic.
The NF Clinic is located at the new Children’s Hospital, 45th & Penn Ave, Pittsburgh, PA, 15202, 2nd Floor, Section B (Bear). NF patients are evaluated on the 4th Thursday of every month. An estimated 20-25 patients are seen per clinic.
NF social worker Sinikka Davis is available for individual, family, or group support. Please contact Sinikka Davis, MSW at Children’s Hospital of Pittsburgh at 412-788-1503 or 412-692-6544.
For more information on the NF Clinic, please follow this link: CLICK HERE
For information pertaining to Gamma Knife Surgery at UPMC
Gene Testing for NF
In the past, testing to determine whether an individual has the changed gene that causes either type of NF has required that at least two family members with NF and multiple family members without NF provide blood samples. This type of testing is called linkage analysis.
Recently direct gene testing has become available. Direct gene testing means an individual can be tested without blood samples from other relatives. However, direct gene testing is not 100% accurate. Further research is necessary to make the testing for both NF1 and NF2 more accurate. Individuals who want more information about direct gene testing should consult a geneticist.
For further information, call or write:
NEUROFIBROMATOSIS CLINICS ASSOCIATION
PO Box 14185
Pittsburgh, PA 15239
NFCA Social Worker