1. The National Neurofibromatosis Foundation - NF Comprehensive information sponsored by the National neurofibromatosis Foundation for people with NF, Category Health Conditions and Diseases neurofibromatosis......neurofibromatosis, NF, neurofibromatosis 1, NF1, neurofibromatosis 2, NF2, NF Foundation,NF Research, NF Clinical Programs, NF Public Education, NF Fundraising http://www.nf.org/

neurofibromatosis, NF, neurofibromatosis 1, NF1, neurofibromatosis 2, NF2, NF Foundation, NF Research, NF Clinical Programs, NF Public Education, NF Fundraising, NF Support Groups, International NF Association, Von Reckinghausen's Disease, Vestibular Schwannoma, Neurofibromas., Plexiform Neurofibroma, NF and Learning Disabilities, National Neurofibromatosis Foundation, Neurofibromatosis One, Neurofibromatosis Two, International Neurofibromatosis Association CENTER OF EXCELLENCE AWARD: In the Spotlight New Postdocotoral Fellowship Program The Post-Doctoral Fellowship Awards will provide salary support for a period of up to two years for clinical or research fellows to conduct research sponsored by a mentor whose laboratory focuses on the cause and treatments of Neurofibromatosis 1 or 2 or Schwannomatosis. For detailed guidelines and application forms, please

2. THE NF, INC. WEB SITE! THE NEUROFIBROMATOSIS, INC. HOMEPAGE Support and information for those with neurofibromatosis. http://www.nfinc.org/

Go To Current Events What Is NF Resources Chapters NF Ink Bulletin Board Contact Us Site Info Main Page Site Map Welcome to the Neurofibromatosis, Inc. Homepage. Be Sure To Visit Leadership Login Donate To NF, Inc. NF In The Media NF-2 ... Online NF Novel Order Your NF, Inc T-Shirt NF Books NF Medical Resource Listings June 2002 NF, Inc. is an organization made up of independent state and regional chapters, providing support and services to NF families. In addition to assisting individuals and families, NF, Inc. works closely with clinical and research professionals who specialize in the treatment of NF. If you wish further assistance regarding patient care, support groups, or any other information about NF, please feel free to E-Mail us or call us at or Last updated March 28, 2003 This Neurofibromatosis Webring site is owned by NF, Inc. Previous 5 Sites Previous Next ... Main

3. The Neurofibromatosis Association neurofibromatosis(Von Recklinhausen disease) A review of the most important aspects on physical examination, classification and treatment. neurofibromatosis. neurofibromatosis(NF) is an autosomal dominant disease characterized by disordered growth of http://www.users.zetnet.co.uk/neurofibromatosis

4. Neurofibromatosis Resources Comprehensive source of links to NF information, including support groups, personal stories and associated conditions. http://neurosurgery.mgh.harvard.edu/NFR

http://neurosurgery.mgh.harvard.edu/NFR/ Please read this Important Information before accessing this web site. One stop shopping for the BEST Neurofibromatosis information on the Web! Welcome! My name is Carol, and my life partner, Gene, has Neurofibromatosis, Type One. We've collected links to some of the finest sources of information about NF on the Internet. There is a great deal of information out there! Unfortunately, a lot of it was not written with regular people in mind. On these pages, you will find carefully selected sites - only the best. We hope that this information will help answer your questions and that you'll find it helpful. INFORMATION: general information on both types of Neurofibromatosis, most including in-depth discussion of Type 1, also known as Peripheral Neurofibromatosis or von Recklinghausen's Disease MORE INFORMATION ON NF-2 AND ACOUSTIC NEUROMA: information on the more rare Type 2, also known as Central Neurofibromatosis or Bilateral Acoustic Neurofibromatosis CHILDREN AND ADOLESCENTS: links pertaining specifically to children and teenagers who have NF (includes scoliosis, epilepsy, and learning disability links, among others)

5. MEDLINEplus: Neurofibromatosis neurofibromatosis From the National Institutes of Health. neurofibromatosis (National Institute of Neurological Disorders and Stroke) http://www.nlm.nih.gov/medlineplus/neurofibromatosis.html

Skip navigation Other health topics: A B C D ... List of All Topics Neurofibromatosis Contents of this page: From the NIH Diagnosis/Symptoms Research Genetics ... Children Search MEDLINE for recent research articles on Neurofibromatosis You may also be interested in these MEDLINEplus related pages: Brain and Nervous System Cancers Genetics/Birth Defects From the National Institutes of Health Neurofibromatosis (National Institute of Neurological Disorders and Stroke) Also available in: Spanish Neurofibromatosis (National Institute of Neurological Disorders and Stroke) Clinical Trials ClinicalTrials.gov: Neurofibromatoses (National Institutes of Health) Neurofibromatosis Clinical Trials (National Neurofibromatosis Foundation) Diagnosis/Symptoms Diagnosing NF1 (National Neurofibromatosis Foundation) Diagnosing NF2 (National Neurofibromatosis Foundation) Disease Management Managing NF1 (National Neurofibromatosis Foundation) Managing NF2 (National Neurofibromatosis Foundation) Research Researchers Identify Potential Treatment for Learning Disability in Neurofibromatosis (National Institute of Neurological Disorders and Stroke) Specific Conditions/Aspects Schwannomatosis (National Neurofibromatosis Foundation) Some Frequently Asked Questions About NF2 (National Neurofibromatosis Foundation) Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis (National Institute on Deafness and Other Communication Disorders) Genetics Genetics Of Neurofibromatosis Type 1 (NF1) (National Neurofibromatosis Foundation) Genetics Of Neurofibromatosis Type 2 (NF2) (National Neurofibromatosis Foundation)

6. GeneReviews: Neurofibromatosis 1 Clinical description and diagnostic and technical details of this condition typified by numerous benign tumors of the nervous system. http://www.geneclinics.org/profiles/nf1

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7. ::: Asociación Argentina De Neurofibromatosis Asociaci³n cuyo prop³sito es el estudio y la difusi³n de la enfermedad neurofibromatosis . NF1, NF2. http://www.aanf.org.ar

Web Site provisorio Asociación civil sin fines de lucro con personería jurídica, resolución Inspección General de Justicia N° 000326 Fundadora: Gabriela Aiello En noviembre del año 1999, la Sra. Gabriela Aiello, junto con un grupo de afectados de NF1 y NF2, se reunieron y formaron la ASOCIACIÓN ARGENTINA DE NEUROFIBROMATOSIS, sin fines de lucro que nuclea a afectados, padres, familiares, amigos y voluntarios no afectados por la enfermedad. COMISION DIRECTIVA Presidente: Secretario: Adriana Chiaranda Tesorero: Sergio Bustos Vocales Titulares: Roberto Juarez Silvina Beer Vocales suplentes: Liliana Becerra Alberto Cossavella Celeste Rodriguez Alejandra Hellmann La Asociación Argentina de Neurofibromatosis es una asociación de voluntarios sin fines de lucro y tiene como objetivos: # Agrupar a la mayor cantidad de personas afectadas por la enfermedad, para compartir experiencias, contenernos, asesorarnos, buscar información tanto de la enfermedad como de los avances en las investigaciones y así poder compartirlas, (incluso con algunos médicos).

8. Neurofibromatosis Recklinghausen Om foreningen, kalender, sygdommen, butikken, kontakter og presseklip. http://www.nfrecklinghausen.dk/

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9. Nfca A nonprofit organization for people with NF and their families. http://trfn.clpgh.org/nfca

Growing awareness. Seeking hope. P.O. Box 14185 Pittsburgh, PA 15239 (412)795-3029 (phone) (412) 795-3098 (fax) The NFCA is registered as a charitable organization (ID #25-176-3156) United Way of Allegheny County Designation code: #885410 Send us e-mail at NFPittsburgh@aol.com WHAT'S NEW? What is the Neurofibromatosis Clinics Association? NFCA SUPPORT GROUP ... Enter NF Chat Room This page is maintained by Ann Kramer. Last modified : Tuesday, 11-Feb-2003 14:54:14 EST Send comments to: NFPittsburgh@aol.com Search Three Rivers Free-Net Health/Other Diseases ... Volunteer Opportunities You are the 41065th visitor since February 12, 1998

10. NINDS Neurofibromatosis Information Page Information page compiled by NINDS, the National Institute of Neurological Disorders and Stroke.Category Health Conditions and Diseases neurofibromatosis......neurofibromatosis information sheet compiled by the National Institute ofNeurological Disorders and Stroke (NINDS). More about neurofibromatosis, http://www.ninds.nih.gov/health_and_medical/disorders/neurofibro.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Neurofibromatosis Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Neurofibromatosis Information Page Reviewed 07-01-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Neurofibromatosis? Is there any treatment? What is the prognosis? What research is being done? ... Additional resources from MEDLINEplus What is Neurofibromatosis? Is there any treatment? What is the prognosis? In most cases, symptoms of NF1 are mild, and patients live normal and productive lives. In some cases, however, NF1 can be severely debilitating. In some cases of NF2, the damage to nearby vital structures, such as other cranial nerves and the brainstem, can be life-threatening. What research is being done?

11. Neurofibromatosis(Von Recklinghausen's Disease) MEDSTUDENTS-NEUROLOGY A review of the most important aspects on physical examination, classification and treatment, for medical students. http://www.medstudents.com.br/neuro/neuro7.htm

NEUROLOGY CARLOS EDUARDO REIS Medstudents' Homepage Neurofibromatosis Neurofibromatosis(NF) is an autosomal dominant disease characterized by disordered growth of ectodermal tissues, and is part of a group of disorders called Phakomatoses (neurocutaneous syndrome). NF is divided in two Types: Neurofibromatosis 1(Von Recklinghausen's disease) Neurofibromatosis 1(NF1) is characterized by spots of increased skin pigmentation(café au lait spots), combined with peripheral nerve tumors and a variety of others dysplastic abnormalities of the skin, nervous system, bones, endocrine organs and blood vessels. Etiology The reponsible gene is located on the long arm of chromosome 17 Epidemiology Its incidence is 1 per 3.000 births and present in about 30 persons per 10.000 population. It is inherited as an autosomal dominant trait, but about 50 percent of cases arise as mutations. Pathology The peripheral nerve tumors of two types, schwannomas and neurofibromas. Both types of tumor occasionally become malignant. Clinical Manifestations The pigmented spots are irregular in shape with relatively even borders, vary in size, and are of brownish coffe color(café au lait). They are most proeminent over the trunk, in the axilla(axillary freckles), and about the pelve.

12. Neurofibromatosis Clinics Association Volunteer Opportunities Details of many ways to volunteer to help the neurofibromatosis Clinics Association.Category Health Conditions and Diseases neurofibromatosis......Volunteer Opportunities. Opportunities exist in several areas FundraisingEvents. 5K WALK FUN RUN APRIL 12, 2003; Men Womens http://trfn.clpgh.org/nfca/volunteer.html

Volunteer Opportunities Opportunities exist in several areas: Fundraising Events NF Women's Golf Challenge - September 8, 2003 Committees Public Relations Education Grant Writing Speaker's Bureau Administrative functions For more information on volunteering with the NFCA, please call (412) 795-3029 or email us at NFPittsburgh@aol.com Main Page Mission Statement Definitions ... Links

13. M. D. Anderson Cancer Center - Neurofibromatosis (NF) Clinic Information about neurofibromatosis and details of the center which provides diagnosis, treatment, patient education, and relevant research. http://www.mdanderson.org/departments/neurofibrom/

Care Center Information A to Z Department List Breast Center Cancer Prevention Gastrointestinal Genitourinary Gynecologic Oncology Internal Medicine Plastic Surgery Radiation Treatment Sarcoma Thoracic Alopecia Areata Aplastic Anemia Basal/Squamous Cell Carcinomas Bladder Blood Stem Cell Transplant Bone Cancer Bone Marrow Failure (pediatric) Bone Marrow Transplants Brain Brain Tumors (pediatric) Breast Cancer Burkitt's Lymphoma Cancer Survivorship Cardiovascular Diseases Central Nervous System Cervical Chemoprevention Chest Wall and Sternal Tumors Childhood Cancers Colorectal Complementary Medicine Dermatology - General Endometrial Esophageal Ewing's Sarcoma - pediatric Eye Cancers Eyelid/Orbital Tumors Fallopian Tube Germ Cell Tumors Germ Cell Tumors (pediatric) Gestational Trophoblastic Disease Graft Vs. Host Disease (GVHD) Head and Neck Cancers Hematologic Malignancies Hereditary Gynecologic Cancers Hodgkin's Disease Hodgkin's Disease (pediatric) Idiopathic Hypereosinophilic Synd Kidney Larynx Leptomeningeal Disease Leukemia Leukemia (pediatric) Liver Tumors Lung Lymphoblastic Lymphoma Lymphoma Lymphoma - Cutaneous T-Cell Mediastinal Tumors Medulloblastoma (pediatric) Melanoma Melanoma (eye) Melanoma (head and neck area) Mesothelioma Myelodysplastic Syndrome Myeloma - Multiple Nasopharynx Neuroblastoma (pediatric) Neurofibromatosis (pediatric) Non-Hodgkin's Lymph. (pediatric)

14. Daniels Nf Page A child living with neurofibromatosis and optic glioma with links. http://www.ilynn6.freeserve.co.uk

Daniel's NF Page A neurofibromatosis story and links to NF sites E-MAIL -Links The Neurofibromatosis Association (UK) NF Inc (USA) ... Optic-Glioma This Neurofibromatosis Webring owned by Ian Lynn Previous 5 Sites Previous Next ... RingSurf This page is all about our son, Daniel. He has a genetic disorder called Neurofibromatosis Type 1 Dan was born in Plymouth , England in 1993. He has four brothers. Chris Matt Reece and Ryan He has had to endure quite a bit over the years more than most have to endure in a life time. Even losing his sight at the age of five. This is of course , cutting a long story short. If you really want to know more about the problems Daniel has had to overcome then click on this link to read Daniel's story this site is more a story of hope and how resilient children can be. Not one of doom and gloom. You may have a child who has just been diagnosed with NF or you may have been living with NF for a long time. You may be a medical professional or just came across the site by accident. Either way I hope you find it useful. As well as Dan's story we have provided some useful links to NF sites the world over.

15. Neurofibromatosis Association Of Australia Inc. - Home Page Support group for people with neurofibromatosis. Has a medical and scientific advisory board and close Category Health Conditions and Diseases neurofibromatosis...... Content Last Updated 11 December 2001 Copyright © 2001,neurofibromatosis Association of Australia Inc. http://www.nfaa.org.au/

PO Box 84 West Ryde NSW 1685 Email us: info@nfaa.org.au Fax + 61 2 98740144 Phone + 61 2 98740844 About Us News Resources Links Content Last Updated: 11 December 2001

16. Neurofibromatosis 1 And Neurofibromatosis 2...[Fulltext, July 2 JAMA.1997;278:51 Revised criteria published in JAMA in 1997, by the National neurofibromatosis Foundation Clinical Care Advisory Board. http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_278/no_1/rv71001.htm

JAMA Latest news In this issue Table of Contents Past issues Instructions for Authors Information on Letters to the Editor About JAMA Subscribe Advertising ... Search Review - July 2, 1997 The Diagnostic Evaluation and Multidisciplinary Management of Neurofibromatosis 1 and Neurofibromatosis 2 David H. Gutmann, MD, PhD; Arthur Aylsworth, MD; John C. Carey, MD; Bruce Korf, MD, PhD; Joan Marks, PhD; Reed E. Pyeritz, MD, PhD; Allan Rubenstein, MD; David Viskochil, MD, PhD Neurofibromatosis 1 and neurofibromatosis 2 are autosomal dominant genetic disorders in which affected individuals develop both benign and malignant tumors at an increased frequency. Since the original National Institutes of Health Consensus Development Conference in 1987, there has been significant progress toward a more complete understanding of the molecular bases for neurofibromatosis 1 and neurofibromatosis 2. Our objective was to determine the diagnostic criteria for neurofibromatosis 1 and neurofibromatosis 2, recommendations for the care of patients and their families at diagnosis and during routine follow-up, and the role of DNA diagnostic testing in the evaluation of these disorders. Published reports from 1966 through 1996 obtained by MEDLINE search and studies presented at national and international meetings.

17. British Columbia Neurofibromatosis Foundation - Home Page BCNF is a membership driven organization, which empowers individuals with NF and their families to reach their full potential by providing support, education and research funding. http://www.bcnf.bc.ca

British Columbia Neurofibromatosis Foundation 1562 Fort Street, Victoria, B.C. V8S 5J2 Phone: (250) 370-7597 or 1-800-385-BCNF (2263). Fax: (250) 370-7598 e-mail: bcnf@bcnf.bc.ca Welcome to the BCNF Website! BCNF is a non-profit charitable organization serving individuals and families throughout British Columbia and Western Canada. This site is meant to offer assistance and information to those looking to contact us and use, or contribute to, our services. It is not intended to replace the diagnosis and care provided by your personal physician. What are the neurofibromatoses? The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumours to grow on nerves and produce other abnormalities such as skin changes and bone deformities. The neurofibromatoses occur in both sexes and in all races and ethnic groups. This site deals with both neurofibromatosis type1 (NF1) and neurofibromatosis type 2 (NF2), however, the common name is really a historical error, as the two disorders were once believed to be closely related. Today it is known from genetic research that they are unrelated, each the result of a distinct gene on separate chromosomes. Further confusion results from other historical names: most older technical articles refer to the neurofibromatoses collectively as von Recklinghausen disease, after the doctor who first published studies of cases. More unfortunately, many people referred to the disorders as the Elephant Man's disease, since it was believed that John Merrick had NF, now generally refuted. (You can read more about this

18. Neurofibromatosis, Inc. Homepage - What Is NF What Is NF Effects Of NF References Misconception Transcripts neurofibromatosis,pronounced Neurofi-bro-ma-to-sis, (NF for short), is a genetic disorder http://www.nfinc.org/whatisnf.html

Go To Current Events What Is NF Effects Of NF References Misconception Transcripts Chapters NF Ink Bulletin Board Contact Us Site Info Main Page Site Map What Is NF Effects Of NF References Misconception ... Transcripts Neurofibromatosis, pronounced Neuro-fi-bro-ma-to-sis (NF for short), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States, (one in every 3,000 to 4,000 births), even though not many people are familiar with it. For More Infomation Effects Misconception References Transcripts ... Research More links... General Support Groups Clinics There are two genetically distinct forms of NF, NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, even though the gene for both

19. WebRing: Hub Promotes education, enlightenment, and encouragement. Open to organizations, medical sites, and personal homepages. Sites pertaining to all aspects of the disorder are welcome, including associated conditions. http://r.webring.com/hub?ring=neurofibroma&list

20. Golf Information on event in Pittsburgh, Pennsylvania. http://trfn.clpgh.org/nfca/golf.html

3rd Annual Mixed Golf Scramble to benefit the Neurofibromatosis Clinics Association will be held on Friday, July 5, 2002 9:00 AM Cedarbrook G.C. (Gold Course) Cost: *$110 per person includes: 18 holes of golf with cart Buffet dinner Please make check payable to: "NFCA" *$50.00 is tax deductible Send to: NFCA P.O. Box 14185 Pittsburgh, PA 15239 ******If you are a single golfer or have less than a foursome, we will place you with other golfers to form a four-person team. Main Page Mission Statement Definitions Newsletter ... Links

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