A neurofibromatosis specialist at Moffitt Cancer Center can provide the safe, effective and individualized treatment you need if you’ve been diagnosed with this complex and lifelong condition. UF Health physicians have extensive expertise in For more information on how we’re protecting our new and existing patients, visit our COVID-19 Info Hub. An online resource for referring physicians and their staff. does anybody know of any doctors or hospitals that participate in the electro-dessication procedures in the Florida area? Xia Wang, MD, PhD Neurofibromatosis Clinic Moffitt Cancer Center 12902 USF Magnolia Drive Tampa, FL 33612 Presentation will be in lecture… Read Story I dont have health insurance ... Pediatric neurologist, Kaleb Yohay, MD, and director of NYU Langone’s Comprehensive Neurofibromatosis Center discusses NF 1 Guidelines for Adult patients. Here is a link that I hope can help, good luck. Specialty: NF1, NF1, Schwannomatosis, Adults, Children Some have only minor skin findings while others may develop extensive disease. A neurofibromatosis specialist at Moffitt Cancer Center can provide the safe, effective and individualized treatment you need if you’ve been diagnosed with this complex and lifelong condition. in gainesville has a doctor who knows about N F. Ive been to USF's genetisist (spc), are there more doctors there that know about it? Each neurofibromatosis specialist on Moffitt’s multispecialty tumor board has highly focused skills and experience. If you cannot travel to Miami, ask for a referral to your area. This patient information and photograph on Orlando NEUROFIBROMATOSIS Treatments is provided by John L. Meisenheimer, M.D. Neurofibromatosis is a complicated disorder, and it should be treated at a major medical center by specialists with expertise in the condition. We do not require referrals, and all of our diagnostic, treatment and supportive care services are available in a single, convenient location. When I lived In Fl I was on the east side and went to Jackson Memorial But I see your on the north west side I would try to go into Tampa call the largest hospital their or go to Orlando (1 ½ hours ) or even Jacksonville (3 ½ hour drive) search largest hospital then call see who heads up the department and make appointment. HOPE TO TALK TO YOU SOON, MeganLee REFERRING PHYSICIANS Providers and medical staff can refer patients by submitting our online referral form. Contact: Sridharan Gururangan, FRCP, Edin. My doctor won't do anything even though ... Click here for a current list of insurances accepted at Moffitt. The specific doctors and health care professionals involved will depend on the patient’s tumor, symptoms and treatment. Children of affected individuals have a fifty-fifty chance of being born with neurofibromatosis. If you are eligible for a virtual appointment, our scheduling team will discuss this option further with you. I'm not sure of her last name, but the genetic counselor in that department is very friendly and I bet she'd be able to lead you in the right direction for finding a doctor. Please call 1-888-663-3488 for support from a Moffitt representative. 2 Replies, hello!! Specialty: NF1, Adults, Children 10 Replies, I am almost 50 years old and have had little luck with doctors understanding this. Please throw any suggestions you can my way and I thank you in advance for your help. Physicians: Xia Wang, MD, PhD To start a new discussion in this community, please click here. I'll send her number in a message to you. Neurofibromatosis is an unusual hereditary disease of the skin and occasionally other organs. For Moffitt faculty & staff members to access MoffittNet applications. Contact her office at: 305-663-8595 Kelly Walsh-Curtis Our neurosurgeons and surgical oncologists address nerve tumors with a high level of precision using advanced, minimally invasive surgical techniques, which also allow them to access difficult-to-reach neurofibromas that have developed near critical nerve pathways. We had to call several times and left several messages before anyone contacted us and frankly I think we were contacted only because our tone of voice in the last couple of calls. Director, Neurofibromatosis Program Clinical Genetics…. a board certified Dermatologist and skin care specialist based in Orlando, Florida. Our commitment to advancing neurofibromatosis research and treatment has resulted in our designation as a Comprehensive Cancer Center by the National Cancer Institute. Neurofibromatosis Network is a 501(c)3 nonprofit organization created in 1988 to support those living with the neurological disorder, Neurofibromatosis (NF). Our supportive care specialists provide a variety of services, including education, counseling and nutritional support, to help ensure the best possible quality of life for our patients both during and after treatment. NEW PATIENTS To request a new patient appointment, please fill out the online form or call 1-888-663-3488. 21 Replies, My daughter Megan (who will be 10 next week) was recently "diagnosed" with NF1. If you cannot travel to Miami, ask for a referral to your area. Unforgiving!!! Laboratory of Neurogenetics and Neuroscience (LNN), Brain Aging, Behavioral and Cognitive Neurology Division, Request an Appointment Online or call 352-294-5400 for more information, The Evolving Treatment Landscape of NF1-Associated Tumors, This page uses Google Analytics (Google Privacy Policy). Most people that have solitary neurofibromas do not have neurofibromatosis. Kelly Walsh-Curtis Dr. Bauer is an NF specialist and a fantastic physician. Moffitt Notice of Blackbaud Data Incident. I can surgically remove any individual skin growths that are a cosmetic concern. We are also making great strides in our research with a goal to one day find a cure. You don't put a child in an MRI and under Gen Anesthesia for 8 hours and then never contact the parents on the results! Our patient services specialists can assist you with scheduling an appointment, questions about medical records, insurance, billing and more. Social workers will also help coordinate care after the patient leaves the hospital. 2019 WWW.OrlandoSkinDoc.com. Neurofibromatosis is not contagious and you cannot “catch it” from anyone. There is no effective treatment to prevent formation of new neurofibromas. Friday, October 9, 2020 (8:45 am-4:15 pm) In acknowledgement of our progress to date, the National Cancer Institute has designated Moffitt as a Comprehensive Cancer Center, and we are the only cancer center based in Florida to have received this prestigious recognition. I KNOW THIS IS FAR BUT I GO TOO DR.BAUER IN MIAMI AT MIAMI CHILDRENS HOSPITAL AND SHE IS THE BEST DR EVER I JUST MOVED TO DEERFIELD BCH AND STILL PLAN ON SEEING HER. This discussion is closed to comments. If you are eligible for a virtual appointment, our scheduling team will discuss this option further with you. Mayo Clinic has one of the largest and most experienced practices in the United States, with campuses in Arizona, Florida and Minnesota. 12902 USF Magnolia Drive Maybe I just not looking in the right place. We are going to switch geneticists to the one here in St. Petersburg. An online resource for referring physicians and their staff. We are also making great strides in our research with a goal to one day find a cure. Moffitt Cancer Center I have been seeing Dr. Ranells since I was 12, I originally saw Dr. Kouseff until he passed. NF Clinic at Florida Hospital for Children, Walt Disney Pavilion Dr. Bauer is an NF specialist and a fantastic physician. 2 Replies, University of Florida Comprehensive NF care.
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