1. Neurofibromatosis, Inc. Support and information for those with neurofibromatosis. http://www.nfinc.org/

Welcome to the Neurofibromatosis, Inc. (NF, Inc.) website. We are a national, tax-exempt, charitable organization whose mission is to create a community of support for those affected by NF, through education, advocacy, coalitions, and supporting research for treatments and a cure. We encourage you to explore our site, check back often, and contact us if you need further information. NF, Inc. Announces a Very Sweet Deal with Coffeecakes.com! Get 10% off scrumptious coffee cakes while supporting NF, Inc.! Click here ... to learn how... Latest News: Illinois NF Symposium Saturday, October 22 New England: Resident joins board of neurofibromatosis charity 2005 NORD Annual Conference ... NF, Inc. Wristbands now available at www.coffeecakes.com

2. Neurofibromatosis(Von Recklinghausen's Disease) MEDSTUDENTS-NEUROLOGY neurofibromatosis(Von Recklinhausen disease) A review of the most important aspects on physical examination, classification and treatment. 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.

3. Index1 Information about the UK Association, including family support, membership details and local group contacts. http://www.users.zetnet.co.uk/neurofibromatosis/

THE NEUROFIBROMATOSIS ASSOCIATION Welcome to the former website of the UK Neurofibromatosis Association. If you are not redirected to our new site within 10 seconds please click on the following URL http://www.nfauk.org/

4. British Columbia Neurofibromatosis Foundation - 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 203-1001 Cloverdale Avenue, Victoria, B.C. V8X 4C9 Phone: (250) 370-7597 or 1-800-385-BCNF (2263). Fundraising Line (250) 380-7591. Fax: (250) 370-7598 e-mail: bcnf@bcnf.bc.ca Mailing List http://www.milonic.com/ Welcome to The BCNF! A Parent's Guide to the Learning Disabilities associated with Neurofibromatosis Type 1 This guide is designed to act as a resource for parents of children with both NF1 and learning disabilities – at all school ages. Whether your child is just entering kindergarten, or is into his/her high school years, you will find relevant material to address his/her educational needs in this guide. Cost $8.00 Canadian dollars per guide Large orders of 100 or more copies – cost is $6.00 Canadian per copy Payable by: Cheque, Visa, Mastercard To order this guide, send a cheque/money order to BCNF 203-1001 Cloverdale Avenue Victoria, BC V8X 4C9 Or send an e-mail with your contact information to guide@bcnf.bc.ca

5. Neurofibromatosis Clinics Association A nonprofit organization for people with NF and their families. http://www.nfpittsburgh.org/

Home What's NF About NFCA Clinic Info ... Links Growing awareness. Seeking hope. The NFCA is registered as a charitable organization (ID #25-176-3156) United Way of Allegheny County Designation code: #885410 kathyg@pitt.edu ) or Study Coordinator Dr. Pelin Duzenli at (412) 383-9728 for more information. NF Research Support Group Contact Donations ... Upcoming Events

6. 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 Cardiopulmonary Gastrointestinal Genitourinary Gynecologic Oncology Internal Medicine Plastic Surgery Radiation Treatment Sarcoma Thoracic Alopecia Areata Angiogenesis Inhibitors 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 Carcinoid Tumors Cardiovascular Diseases Central Nervous System Cervical Chemoprevention Chest Wall and Sternal Tumors Childhood Cancers Colorectal Complementary/Integrative/Alt Med Dermatology - General Endometrial Esophageal Ewing's Sarcoma - pediatric Eye Cancers Eyelid/Orbital Tumors Fallopian Tube 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 Cancer Lung Lymphoblastic Lymphoma Lymphoma Lymphoma - Cutaneous T-Cell Mediastinal Tumors Medulloblastoma (pediatric) Melanoma Melanoma (eye) Melanoma (head and neck area) Mesothelioma Multiple Endocrine Neoplasias Myelodysplastic Syndrome Myeloma - Multiple Myeloproliferative Disorders Nasopharynx Neuroblastoma (pediatric) Neurofibromatosis (pediatric) Non-Hodgkin's Lymph. (pediatric)

7. Home Page - Neurofibromatosis Association Of Australia Inc. Support group for people with neurofibromatosis. Has a medical and scientific advisory board and close affiliation with similar NF groups overseas. http://www.nfaa.org.au/

About Us News Resources Links ... What's New? PO Box 603 Lindfield NSW 2070 Email us: info@nfaa.org.au Kuringai Centre for Seniors Building 259 Pacific Highway Lindfield NSW 2070 Phone + 61 2 94166244 Fax + 61 2 (To be advised) Site Content Last Updated: 25 July 2005 enquiries@nfaa.org.au

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

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9. Neurofibromatosis European Associations Links to European neurofibromatosis laygroups. http://www.neurofibromatosis-network.org/eur-ass.htm

NF NET ORK Homepage European Ass Ass Européennes ... Page d'accueil EUROPEAN NEUROFIBROMATOSIS LAY GROUPS Von Recklinghausen-Neurofibromatose Gesellschaft Austria N.F.KONTAKT VZW Belgium A.S.B.L. Neurofibromatose Belgium Bulgarian Neurofibromatosis Association (NFA) Bulgaria Association in Czech Republick Narodny Spolecnost pro NF Person of contact: Alena Petrakova, Tel. +0042 24 255 8433 Czech Republick Dansk Forening for Neurofibromatosis Recklinghausen Denmark Suomen Neurofibromatoosiyhdistys r.y. Finland Association Neurofibromatoses et Recklinghausen France Ligue Française contre les Neurofibromatoses France Neurofibromatose - Arbeitskreis Berlin/Brandenburg Germany Neurofibromatose Selbsthilfegruppen Germany Ireland's Web Centre Neurofibromatosis Ireland Associazione Neuro f ibromatosi Italy Lottiamo Insieme per la NeuroFibromatosi Associazione Italy Vereniging Ziekte von Recklinghausen of de Nederlandse neurofibormatose patiëntenvereniging Netherlands Norsk Forening for Nevrofibromatose Norway Association in Portugal Person of contact: Lucia Lemos, Rua Marquesa de Alorna 2 Atelier, Tel. 0035 121 9343 959, Fax. 0035 9343 960

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

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).

11. The Children's Tumor Foundation Ending Neurofibromatosis (NF) Comprehensive information sponsored by the National neurofibromatosis Foundation for people with NF, and links to other sites. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. NF, Inc. Homepage - Ann-Marie Yest, M.D. NF1, which was known as Peripheral neurofibromatosis, is much more common than NF2. It occurs in 1/4000 births, whereas NF2 occurs in 1/40000. http://www.nfinc.org/text/neuro1.html

Neurofibromatosis, Inc.-Mid-Atlantic Meeting Sunday, November 3, 1996 2:50 p.m. - 4:30 p.m., NF Research Update National Institutes of Health, Building 31-C Bethesda, Maryland NF-1 AND NF-2 NEUROSURGERY Ann-Marie Yost, M.D. Department of Neurosurgery George Washington University Medical Center Mary Ann Wilson: George Washington University Hospital still has its affiliation with Children's National Medical Center which is the pediatric unit of George Washington University. Our chapter has a long standing relationship with George Washington University. One thing you may have realized in thinking about medical care for someone with neurofibromatosis (NF) is that you might not really know when a neurosurgeon should be called in to be part of the team. We thought it might be helpful to know just what a neurosurgeon does. It is different with NF1 and different with NF2. Dr. Yost will be talking about both NF 1 and NF2. Dr. Yost: I want to thank you for the opportunity to pinch-hit for Dr. Martuza. He has some really big shoes to fill. I am not going to deal with the areas of genetic research and genetic therapy. I will just talk to you about what we as neurosurgeons have to offer for the patients with NF1 and NF2. I'll start with NF1. I assume that most of you are familiar with the criteria for diagnosis. NF1, which was known as Peripheral Neurofibromatosis, is much more common than NF2. It occurs in 1/4000 births, whereas NF2 occurs in 1/40,000. They both have an autosomal dominant form of genetic transmission. This means that a child has a 50% chance of inheriting the disease if one parent has it and that inheriting the gene definitely means getting the disease. The abnormality in NF1 is found on a very large gene on chromosome 17 which has a very high mutation rate. Although in both NF1 and NF2, 100% of the people who have the genes are affected by the disorder, there is a much higher degree of variability in the symptoms of NF 1, because the mutations can occur in different spots on the larger gene (variable penetrance).

13. The Children's Tumor Foundation: Ending Neurofibromatosis (NF) Through Research Comprehensive information sponsored by the National neurofibromatosis Foundation for people with NF, and links to other sites. http://www.nf.org/

CTF Supporters Donate Activities by State NF Marathon Team Rebounds For Research ... NF Handbook For Scientists Overview CTF Funding Research Newsletter Congressional DOD NF Funding Program NF Resources NF Newsletter Clinical Trials PSA (MPG) NF Links For Kids NF Summer Camp About Us Conact Us Donate ... Privacy Policy © 2005 The Children's Tumor Foundation: Ending Neurofibromatosis Through Research What's New Join the Young Professionals at Au Bar (NYC) on September 21st. CTF Launches Youth Connect Program Summer 2005 Newsletter CTF Names Dr. Kim Hunter-Schaedle as New Chief Scientific Officer ... Run the Las Vegas Marathon for NF!

14. Neurofibromatosis Information Page National Institute Of neurofibromatosis information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. The Children's Tumor Foundation: Ending Neurofibromatosis (NF) Through Research A nonprofit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatosis or http://www.ctf.org/

CTF Supporters Donate Activities by State NF Marathon Team Rebounds For Research ... NF Handbook For Scientists Overview CTF Funding Research Newsletter Congressional DOD NF Funding Program NF Resources NF Newsletter Clinical Trials PSA (MPG) NF Links For Kids NF Summer Camp About Us Conact Us Donate ... Privacy Policy © 2005 The Children's Tumor Foundation: Ending Neurofibromatosis Through Research What's New Join the Young Professionals at Au Bar (NYC) on September 21st. CTF Launches Youth Connect Program Summer 2005 Newsletter CTF Names Dr. Kim Hunter-Schaedle as New Chief Scientific Officer ... Run the Las Vegas Marathon for NF!

16. Neurofibromatosis Webring 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

17. Neurofibromatosis Fact Sheet National Institute Of Neurological More about neurofibromatosis Studies with patients Research literature Press releases. Disclaimer Search NINDS (help) Contact Us My Privacy http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. The Children's Tumor Foundation: Ending Neurofibromatosis Through Research From the laboratory to the bedside, breakthroughs in neurofibromatosis (NF) research by Foundationfunded scientists have revolutionized our understanding http://www.ctf.org/research/

Research Related Links Research Newsletter Patient Information CTF's Commitment to NF Research Since 1978, Children's Tumor Foundation (CTF) has been committed to supporting and promoting scientific research that will ultimately lead to the development of therapies and cures for neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), schwannomatosis and related disorders. CTF funds scientific research, currently focusing on encouraging young investigators early in their careers to carve out a career in NF research. CTF convenes world-class meetings to bring together scientists to share ideas and scientific meetings and develop collaborations. CTF works closely with government funding agencies to share information and resources. Our efforts help secure special congressional NF research funds each year that make a real difference to the progress of research - $25 million in 2005! Created the first national research program on NF in the world?

19. Neurofibromatosis, Inc. Support and information for those with neurofibromatosis. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. MedlinePlus: Neurofibromatosis neurofibromatosis. From the National Institutes of Health; neurofibromatosis (National Institute of Children; neurofibromatosis (Nemours Foundation) http://www.nlm.nih.gov/medlineplus/neurofibromatosis.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Neurofibromatosis Contents of this page: From the NIH Overviews Diagnosis/Symptoms Genetics ... Children Search MEDLINE/PubMed 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) - Short Summary Overviews Neurofibromatoses (March of Dimes Birth Defects Foundation) Also available in: Spanish What is Neurofibromatosis? (Dolan DNA Learning Center) What Is NF? (Children's Tumor Foundation) Diagnosis/Symptoms Diagnosis of NF1 (Children's Tumor Foundation) Diagnosis of NF2 (Children's Tumor Foundation) Disease Management Managing NF1 (Children's Tumor Foundation) Managing NF2 (Children's Tumor Foundation) Specific Conditions Manifestations of NF1 (Children's Tumor Foundation) Manifestations of NF2 (Children's Tumor Foundation) (Children's Tumor Foundation) Schwannomatosis (Children's Tumor Foundation) Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis (National Institute on Deafness and Other Communication Disorders) Clinical Trials ClinicalTrials.gov: Neurofibromatoses

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