UCLA Multidisciplinary NF Clinic
About our Center
UCLA Multidisciplinary NF Clinic
The UCLA NF2 Clinic offers a comprehensive multidisciplinary approach for neurofibromatosis type 2 (NF2) and schwannomatosis patients. The core team includes pediatric and adults neuro-oncologists, neurosurgeons, neuro-otologists, and clinical geneticists. The team convenes regularly with a panel of experts in relevant sub-specialties (neuro-ophthalmology, neuro-radiology, neuro-pathology, audiology) and with NF2 specialists at the House Clinic, to design an individualized patient and family-centered plan of care to meet each patient's unique medical needs. The UCLA NF2 Clinic is one of the few in the country that sees both adults and children. As part of UCLA Health, the NF2 clinic provides access to state-of-the-art imaging and surgical facilities as well as world-renowned experts in "bench to bedside" NF research and clinical trials.
The UCLA NF Clinic is part of a national and international collaboration of medical centers and providers seeking to find the best treatments for patients with NF and to advance research. Their goal is to provide a patient-centered medical home for this life-long, complicated syndrome. Care providers at the UCLA NF Clinic are part of one of the largest brain and peripheral nerve tumor centers in the world. The clinic is designated as an affiliated clinic of the Children’s Tumor Foundation and is part of the Department of Defense-sponsored NF Clinical Trials Consortium. Our clinic director is also a member of the Response Evaluation in Neurofibromatosis & Schwannomatosis (REiNS) International Collaboration.
Contact Us
To Request an Appointment:
Our team wants to make sure we are prepared for your visit, that we reserve the appropriate amount of time and that we consult colleagues that may be able to assist before your visit. In order for our comprehensive core team to create a personalized plan of care, we recommend to provide us the following materials prior to your clinic visit with us:
- A copy of your MRI/CT disks
- Surgical, diagnostic imaging and pathology reports
- Medical records
- Referrals (if necessary)
After we have gathered your basic information, one of our team members will schedule an appointment for you with the appropriate medical provider. Please submit a copy of all of your medical records (as indicated above) to our office in advance of your appointment. In addition, please bring all original imaging and records to your appointment.
For more information:
Call us at (310) 825-5111 or send an email to braintumor@mednet.ucla.edu to make an appointment or refer a patient.
Neurofibromatosis Clinic Doctors and Staff
At the UCLA NF Clinic, a team of doctors and other health care professionals works together to provide the most effective and safest treatment possible for patients with neurofibromatosis. The core members of the UCLA NF Clinic care team include genetic counselors, neurologists, neuro-oncologists, neuro-otologists, and neurosurgeons.
Clinic Directors
Phioanh (Leia) Nghiemphu, MD, Director
Marco Giovannini, MD, PhD, Scientific Director
Core team members:
Neuro-Otology
Akira Ishiyama, MD
Quinton Gopen, MD
Neurosurgery
Richard Everson, MD
Marvin Bergsneider, MD
Nader Pouratian, MD, PhD
Anthony C. Wang, MD
Isaac Yang, MD
Michel Kalamarides, MD, PhD
(Liaison with European NF Network)
Neuro-ophthalmology
Laura Bonelli, MD
Clinical Genetics
Vivian Y. Chang, MD
Julian A. Martinez, MD, PhD
Neuroradiology
Noriko Salamon, MD
Stellios Karnezis, MD
Neuropathology
William H. Yong, MD
Other doctors and health care professionals with special expertise in neurofibromatosis may also be part of the care team.
Support Groups
Many people and families with neurofibromatosis or schwannomatosis appreciate being in touch with other people who are similarly affected. The following is a list of support services which can help the patient and family members cope with the emotional and practical issues being faced.
Children's Tumor Foundation The Children's Tumor Foundation offers resources on neurofibromatosis (NF) research opportunities, as well as information on the condition.
Advocure for NF2 Advocure for NF2 is an advocacy group which offers resources on research and drug clinical trials for NF2 throughout the world.
Neurofibromatosis California NF California's goal is to create a community of support for individuals and families affected by Neurofibromatosis through education, patient advocacy, coalitions, raising public awareness, and supporting research and treatments for a cure.
Clinical Trials
The Neurofibromatosis Tumor Program at UCLA is at the forefront of medical innovation. We are involved in numerous clinical trials to further our understanding of NF tumors and to develop new treatments. For further information about clinical trials, please send an email to braintumor@mednet.ucla.edu.
