1. 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 Check It Out! 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 2003 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 24, 2004 Current Events Resources What Is NF Chapters ... Main

2. Neurofibromatosis Resources Lots of links to understandable information about NF and acoustic neuroma, conditions associated with those disorders, personal stories, and hardto-locate photos of visible signs of NF-1. One stop shopping for the BEST neurofibromatosis information on the Web! My name is Carol, and my life partner, Gene, has neurofibromatosis, Type One 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)

3. NINDS Neurofibromatosis Information Page neurofibromatosis information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). What is neurofibromatosis? Is there any treatment What is neurofibromatosis? The neurofibromatoses are genetic disorders of the nervous system that primarily affect the 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 Synonym(s): Von Recklinghausen's Disease 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?

4. Neurofibromatosis European Associations Poems Poèmes. Livres. Page d accueil. EUROPEAN neurofibromatosis LAY GROUPS. ASBL Neurofibromatose, Belgium. Bulgarian neurofibromatosis Association (NFA). Bulgaria. 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

5. The National Neurofibromatosis Foundation - NF More ». », Comprehensive Genetic Testing for NF1 Available Now. More ». © 2004 The National neurofibromatosis Foundation, Inc. All rights reserved. Disclaimer. http://www.nf.org/

Did you know? When you enter Amazon.com through our special NF link, a percentage of your purchase will go to support NF research. Go to Amazon.com through our special NF link now! Click here! Add our special Amazon link to your "favorites" menu on your browser. Add Bookmark Now! WORLD'S LEADING SCIENTISTS MEET IN COLORADO: The NF Marathon Team Rebounds For Research Latest NF Developments Monday, July 12, 2004: The 5th Annual NNFF Foundation Golf Tournament, East Aurora, NY

6. MedlinePlus: Neurofibromatosis neurofibromatosis National Institutes of Health. neurofibromatosis ( National Institute of Neurological Disorders available in Spanish. neurofibromatosis ( National Institute of Neurological 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: News From the NIH General/Overviews Diagnosis/Symptoms ... 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 Latest News Brain Implant Restores Degree of Hearing (05/26/2004, United Press International) 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 General/Overviews Neurofibromatoses (March of Dimes Birth Defects Foundation) Also available in: Spanish Clinical Trials ClinicalTrials.gov: Neurofibromatoses (National Institutes of Health) ClinicalTrials.gov: Neurofibromatosis 1 (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 First Successful Use of Penetrating Microelectrodes in Human Brainstem Restores Some Hearing to Deaf Patient (House Ear Institute) Researchers Identify Potential Treatment for Learning Disability in Neurofibromatosis (National Institute of Neurological Disorders and Stroke)

7. Las Neurofibromatosis Información sobre neurofibromatosis del Instituto nacional de desórdenes y del movimiento neurológicos/Spanishlanguage fact sheet on neurofibromatosis compiled by the National Institute of son http://www.ninds.nih.gov/health_and_medical/pubs/las_neurofibromatosis.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 a disorder Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health Las Neurofibromatosis Prepare la pagina Web para imprimir Envíe por correo electrónico esta página Web a un amigo o colega Solicite por correo un folleto gratuito Tabla de Contenido ¿Qué son las neurofibromatosis? ¿Qué es la Neurofibromatosis Tipo 1 (NF1)? ¿Cuáles son los signos y síntomas de la Neurofibromatosis Tipo 1 (NF1)? ¿Cuándo aparecen los síntomas? ... ¿Dónde puedo obtener más información? ¿Qué son las neurofibromatosis? Las neurofibromatosis son trastornos genéticos del sistema nervioso que afectan principalmente al desarrollo y crecimiento de los tejidos de las células neurales (nerviosas). Estos trastornos ocasionan tumores que crecen en los nervios y producen otras anormalidades tales como cambios en la piel y deformidades en los huesos. Las neurofibromatosis ocurren en ambos sexos y en todas las razas y grupos étnicos. Los científicos han clasificado los trastornos como neurofibromatosis tipo 1 (NF1) y neurofibromatosis tipo 2 (NF2). Existen otros tipos o variantes de neurofibromatosis, pero éstos no han sido definidos aún. ¿Qué es la Neurofibromatosis Tipo 1 (NF1)?

8. Index1 THE neurofibromatosis ASSOCIATION. Welcome to the former website of the UK neurofibromatosis Association. If you are not redirected 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/

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

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10. Neurofibromatosis Clinics Association A nonprofit organization for people with NF and their families. http://trfn.clpgh.org/nfca

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 NF Research Support Group Contact Donations

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

13. Neurofibromatosis/ Family Village Library neurofibromatosis. Related Conditions NF1, von Recklinghausen disease. Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "neurofibromatosis" Who to http://www.familyvillage.wisc.edu/lib_neuf.htm

Neurofibromatosis Related Conditions: NF1, von Recklinghausen disease Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Neurofibromatosis" Who to Contact Neurofibromatosis, Inc. 9320 Annapolis road, Suite 300 Lanham, Maryland, USA 20706-3123 301-918-4600 (phone) 800-942-6825 (toll-free) 301-918-0009 (fax) E-mail: info@nfinc.org Web: http://www.nfinc.org/ Neurofibromatosis, Inc. is dedicated to individuals and their families who are affected by the neurofibromatoses. They services the needs through coordinated educational, support, clinical and research programs, and promotes national, state and local community involvement. They have local chapters and provide a directory of these in their newsletter and their NF flyer. They will provide materials and assistance to persons wishing to start a support group in their locality and it provides informal parent-to-parent matching. The National Neurofibromatosis Foundation 95 Pine Street, 16th Floor New York, NY 10005

14. Neurofibromatosis Clinics Association - Volunteer Opportunities Details of many ways to volunteer to help the neurofibromatosis Clinics Association. http://trfn.clpgh.org/nfca/volunteer.html

Home What's NF About NFCA Clinic Info ... Links Volunteer Opportunities Opportunities exist in several areas: Fundraising Events 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 NF Research Support Group Contact ... Donations

15. Neurofibromatosis neurofibromatosis information and links to national and international support groups, clinics with genetic counselors and geneticists neurofibromatosisNF I NF II Regional Groups Genetics http://www.kumc.edu/gec/support/neurofib.html

Neurofibromatosis NF I NF II Regional Groups Children ... National Neurofibromatosis Foundation, Inc 95 Pine Street, 16th Floor New York, NY 10005 Phone: 212 344-6633 or toll free: 1-800 323-7938 Contact: Peter Bellermann Fax: 212 747-0004 E-mail: nnff@nf.org Web page www.nf.org or www.neurofibromatosis.org Kids' Council (ages 6-17) includes pen pal "buddies," a drawing contest, and a newsletter. To join, e-mail NNFF@aol.com , or write to NNFF c/o Kids' Council (1-800-323-7938 x23) USA State Chapters Non-English Pages (Arabic, French, Flemish, Portugese, Bulgarian, Danish, German, Italian, Finnish, Spanish) Neurofibromatosis, Inc. USA 8855 Annapolis Rd Lanham, MD 20706-2924 Phone: (800) 942-6825 or (301) 577-8984 Contact: Mary Ann Wilson Fax: (301) 577-0016 Web site: www.nfinc.org/ E-mail: NFInc1@aol.com State and Regional Chapters and Affiliates The Neurofibromatosis Association UK A Brief History of Neurofibromatosis British Columbia Neurofibromatosis Foundation , Canada Helping Your Child Cope with Neurofibromatosis Acoustic Neuroma Association 600 Peachtree Pkwy, #108, Cumming, GA 30041-6899

16. Neurofibromatosis a CHORUS notecard document about neurofibromatosis Disclaimer. Feedback. Search. neurofibromatosis. cafeau-lait spots http://chorus.rad.mcw.edu/doc/00722.html

CHORUS Collaborative Hypertext of Radiology Multisystem entities Feedback Search neurofibromatosis cafe-au-lait spots CNS tumors: neurofibromas meningiomas acousitc neuromas optic nerve gliomas lambdoid suture defect harlequin eye (gtr wing of sphenoid) Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 26 May 2004 Medical College of Wisconsin

17. 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 Myelodysplastic Syndrome Myeloma - Multiple Nasopharynx Neuroblastoma (pediatric) Neurofibromatosis (pediatric) Non-Hodgkin's Lymph. (pediatric)

18. British Columbia Neurofibromatosis Foundation - Home Page British Columbia neurofibromatosis Foundation 2031001 Cloverdale Avenue, Victoria, BC V8X 4C9 Phone (250) 370-7597 or 1-800-385-BCNF (2263). 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 Welcome to the BCNF Website! Who Are We? BCNF is a non-profit charitable organization serving individuals and families throughout British Columbia and Western Canada. Information on the BC Neurofibromatosis Foundation website (www.bcnf.bc.ca) is intended to be used for general information only and should not replace consultation with qualified healthcare professionals. Consult a qualified healthcare professional before making medical decisions or if you have questions about your individual medical situation. The BC Neurofibromatosis Foundation makes every effort to ensure that the information on www.bcnf.bc.ca is accurate and reliable, but cannot guarantee that it is error free or complete. The BC Neurofibromatosis Foundation does not endorse any product, treatment or therapy; neither does it evaluate the quality of services operated by other organizations mentioned or linked to on www.bcnf.bc.ca

19. Associació Catalana De Les Neurofibromatosis - Pàgina Principal Informaci³ sobre aquesta malaltia i possibilitat de contactar amb grups d'ajuda mºtua. Activitats de l'associaci³, tauler d'anuncis i llocs web d'inter¨s. http://www.acnefi.com/catala/gamhome.htm

Les Neurofibromatosis (NF) son un conjunt de desordres genètics causants d'innumerables tumors que creixen al llarg de diversos tipus de nervis i que, també poden afectar al desenvolupament de teixits no nerviosos com ara ossos i pell. Cercar dins la web: Les Neurofibromatosis GAM Contactar Activitats ... Agraïments ACNefi és membre de Eurordis FEDER WebMaster

20. NFAA Inc. - Home Page 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 84 West Ryde NSW 1685 Email us: info@nfaa.org.au Fax + 61 2 98740144 Phone + 61 2 98740844 Site Content Last Updated: 28 May 2004 enquiries@nfaa.org.au

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