21. Neurofibromatosis Webring Home Page Join Edit neurofibromatosis Webring Home Page. Welcome to the neurofibromatosisWebring home page! TOP Submit a site to neurofibromatosis Webring http://neurosurgery.mgh.harvard.edu/NFR/webring.htm

Join Edit Neurofibromatosis Webring Home Page Welcome to the Neurofibromatosis Webring home page! This ring promotes Neurofibromatosis education, enlightenment, and encouragement. It is open to NF organizations, medical sites, and personal homepages. Sites pertaining to all aspects of NF 1 and 2 are welcome, including associated conditions such as learning disabilities, scoliosis, epilepsy, acoustic neuroma, cancer, deafness, blindness, etc. NF information is too scarce, and public awareness is practically non-existent. Let's get together and make ourselves known! TOP Submit a site to Neurofibromatosis Webring Site Title: Site URL: Site Owner: EMail Address: Password: Keywords: Enter up to 20 keywords to describe your site. Be sure to include any diseases or conditions discussed in your site or on your page. Site Description: Enter a short description of your site, including which conditions or diseases are discussed within your site or page. If you are selling a product or service on your site, your site description must begin with the words

22. NEURO-FIBROMA-TOSIS And The Neurofibromatosis Association A Brief History of neurofibromatosis and The Association. While Well,like everything else about neurofibromatosis, it isn't simple. To http://www.users.zetnet.co.uk/neurofibromatosis/history.htm

A Brief History of Neurofibromatosis and The Association. While many will have never heard of neurofibromatosis, most people know something about Muscular Dystrophy or Cystic Fibrosis, and yet, with a birth incidence of 1 in 2,500 - which means around 24,000 people are affected in the UK - Neurofibromatosis (Nf for short) is nearly as common as Cystic Fibrosis. On a world-wide basis it is five times more common than Muscular Dystrophy. Why, you may wonder, is it possible that there is a disorder which affects so many people and yet still is so little known? A disorder which can occur in any family, frequently causes learning difficulties and behavioural problems, affects the body's vital nervous system and can lead to serious complications and, occasionally, even premature death. Well, like everything else about neurofibromatosis, it isn't simple. To begin with, there are two different types of neurofibromatosis, "neurofibromatosis type one" and "neurofibromatosis type two" which we refer to as Nf1 and Nf2. To simplify things here, most of the following information is about Nf1. Secondly, the name doesn't help - NEURO-FIBROMA-TOSIS - and, with its political connotations in the UK, the fact that it is called Nf for short, can be quite a problem.

23. ACNefi - Associació Catalana De Les Neurofibromatosis 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/acnefi.htm

L'Associació és la persona jurídica que ens representa i mitjançant la qual podem actuar i fer-nos sentir. Qui som? Al Novembre de 1996, un petit grup d'afectades de NF, va constituir el Grup d'Ajuda Mútua de la Neurofibromatosi (GAM) - Nefi . Poc a poc es va aplegar gent de Catalunya i d'altres indrets d'Espanya, fins que es va veure la necessitat de tenir una organització que ens representés i mitjançant la qual poguéssim actuar i fer-nos sentir. El Gener del 1998 va néixer l' Associació Catalana de les Neurofibromatosis (ACNefi), que és una associació d'ajuda mútua sense ànim de lucre i des d'aleshores oferim ajuda a afectats i als seus familiars mitjançant els grups d'ajuda mútua, activitats informativas i quaderns divulgatius sobre la malaltia. Què volem? La nostra missió és: Millorar la qualitat de vida dels afectats de la NF oferint: Suport i assessorament tant als afectats com a llurs familiars, orientant-los a la rehabilitació física, psicològica, i a recuperar l'autoestima perduda. Informació, per mitjà de seminaris, cursos, conferències, publicacions, i congressos, del coneixement que se'n tingui de la NF i dels avenços realitzats pel seu reconeixement, prevenció i tractament.

24. MEDLINEplus: Neurofibromatosis Translate this page neurofibromatosis. Otras Otros Recursos neurofibromatosis (Fundaciónde Niños con Defectos de Nacimiento March of Dimes). Información http://www.nlm.nih.gov/medlineplus/spanish/neurofibromatosis.html

Omita y vaya al Contenido Otros temas de la salud: A B C D ... J K L M N O ... V W XYZ Todos los Temas Neurofibromatosis Cerebro y Sistema Nervioso Cáncer Genética y Defectos Congénitos Neurofibromatosis (Instituto Nacional de Desórdenes Neurológicos y Derrame Cerebral) Otros Recursos Neurofibromatosis (Fundación de Niños con Defectos de Nacimiento March of Dimes) Neurofibromatosis Neurofibromatosis es el Instituto Nacional de Desórdenes Neurológicos y Derrame Cerebral Temas de Salud Enciclopedia Tutoriales Interactivos ... National Institutes of Health Actualizado: 27 agosto 2002 Tema actualizado: 09 septiembre 2002

25. Craniofacial Unit At The Chelsea And Westminster Hospital, London Service providing multidisiplinary care for cleft lip and palate and craniofacial conditions, as well as neurofibromatosis and vascular malformations. http://www.cleft-craniofacial.org

Online Information

26. The Neurofibromatosis Association http://www.nfa.zetnet.co.uk/

27. The Elephant Man's Mistaken Identity Article showing that Merrick, diagnosed during his life as suffering from neurofibromatosis, actually suffered from Proteus Syndrome. http://www.parascope.com/articles/0397/elephant.htm

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

NF NET ORK European Ass European Contacts NF World Links Personal Websites ... Page d'accueil EUROPEAN NEUROFIBROMATOSIS LAY GROUPS Von Recklinghausen-Neurofibromatose Gesellschaft Austria N.F.KONTAKT VZW Belgium A.S.B.L. Neurofibromatose Belgium 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 Les Neurofibromatoses France Ligue Française contre les Neurofibromatoses France Von Recklinghausen Gesellschaft e.V. Germany Neurofibromatose - Arbeitskreis Berlin/Brandenburg Germany Neurofibromatose Selbsthilfegruppen Germany Ireland's Web Centre Neurofibromatosis Ireland Associazione Neuro Fibromatosi 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

29. Las Neurofibromatosis Translate this page Información sobre neurofibromatosis del Instituto nacional de desórdenes y delmovimiento neurológicos/Spanish-language fact sheet on neurofibromatosis 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 Get Web page suited for printing Email this to a friend or colleague Request free mailed brochure 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)?

30. Neurofibromatosis Resources - Photographs Photos of cafe au lait spots and external neurofibroma tumors. http://neurosurgery.mgh.harvard.edu/NFR/photos.htm

Photographs Photos which demonstrate different visible aspects of Neurofibromatosis, Type 1 Note: The photos on this page are amateur photos, taken by me. They are intended solely to give the average person an idea of what some of these aspects of the disease look like, and should not be used as references for making a diagnosis of NF-1. Cafe au Lait Spots This image shows a rather large cafe au lait (CAL) spot which extends nearly to the first knuckles on the back of the hand, and about 2 inches above the wrist. Click on picture for a larger image. Here is the same CAL, from the palm side of the hand and arm. Many CALs resemble large freckles, and aren't as extensive as this one. Click on picture for a larger image. Neurofibroma Tumors This photo shows a moderate number of small to medium neurofibroma tumors. Another condition sometimes associated with NF-1 is pectus excavatum , or sunken chest, which is a congenital deformity of the ribcage. For more information on pectus excavatum, visit this very informative site.

31. Neurofibrmatosis - Neurologychannel neurofibromatosis is a genetic disorder that primarily affectsnervous system function, neural cell growth, and the skin. http://www.neurologychannel.com/neurofibromatosis/

Home Search SiteMap Ask the Dr. ... Medical Store advertisement advertisement NEUROFIBROMATOSIS Overview Causes Symptoms Diagnosis ... Prognosis CONDITIONS ADHD ALS Alzheimer's Disease Autism ... Carpal Tunnel Syndrome Cephalic Disorders Cerebral Palsy Charcot-Marie-Tooth Disease Dementia Encephalitis Epilepsy Essential Tremor ... Guillain-Barre Syndrome Headache Huntington's Disease Hydrocephalus Lou Gehrig's Disease ... Traumatic Brain Injury Vertigo TREATMENT OPTIONS Botulinum Toxin Therapy Epidural Injection Trigger Point Injection Vagus Nerve Stimulation RESOURCES Clinical Trials Links Videos ABOUT US Healthcommunities.com Pressroom Testimonial Overview Neurofibromatosis (NF) is a genetic neurological disorder that affects cell growth in nerve tissue. NF produces tumors of the skin, internal organs, and nerves that may become cancerous (malignant). It also can affect bones, causing severe pain and debilitation and may result in learning disabilities, behavioral dysfunction, and hearing and vision loss. There is no cure for neurofibromatosis. Types Neurofibromatosis can be inherited as an autosomal dominant trait (a parent with the disorder has a 50% chance of passing it to an offspring) or can result from a spontaneous genetic mutation.

32. Neurofibromatosis (NF1, NF2): What Is It? National neurofibromatosis Foundation link, DNA Learning Center Link,Concept 1 Children resemble their parents. Learn how Mendel http://www.yourgenesyourhealth.org/ygyh/mason/ygyh.html?syndrome=nf

33. The NF2Crew Website Online discussion group for people with neurofibromatosis 2. http://www.webcrossings.com/nf2crew/

Welcome to The NF2Crew Website, the Web home of the NF2Crew, an online discussion group about NF2. There are many NEW offerings on the NF2Crew Website, from group photos to doctor listings and links . Still available: the NF2Crew chat song Meet the people behind the NF2Crew. Our exclusive compilation of doctors and places for NF2 treatment and quality care. Note this list is STILL growing! All about the Crew - who we are, how we "meet" each other and more. A great selection of NF2-related resources! Have a comment about The NF2Crew Website? We'd love to hear it. Jordan "The Listlady" tells us how it all began Interested in joining the Crew? Sign up Here Bios,How-To's,Announcements (Crew Members Only) Winner - October 31, 1997! This Neurofibromatosis Webring site is owned by The NF2 Crew Previous 5 Next 5 Random ... Neurofibromatosis Webring In Memory of Adam Miller, WebCrossings President and NF2Crew Webmaster

34. The Texas Neurofibromatosis Foundation Texas neurofibromatosis Foundation supports individuals and families in Dallas,Houston, Austin, and San Antonio. THE TEXAS neurofibromatosis FOUNDATION. http://www.texasnf.org/

THE TEXAS NEUROFIBROMATOSIS FOUNDATION Our Vision We are committed to meeting the needs of people challenged with neurofibromatosis by providing care, comfort, support, information, education, funding and other resources for its treatment, prevention and cure. About Texas NF Annual Campaign Board of Directors Calendar of Events ... Home

35. WebRing: Hub About this Ring. This ring promotes neurofibromatosis education, enlightenment, andencouragement. No Adult or Illegal material please. neurofibromatosis, Inc. http://r.webring.com/hub?ring=neurofibroma&list

36. Policy Statement Health Supervision for Children With neurofibromatosis (RE9534). AMERICAN ACADEMYOF PEDIATRICS. REFERENCES. 1. Dunn DW. neurofibromatosis in childhood. http://www.aap.org/policy/00923.html

Policy Statement Pediatrics Volume 96, Number 2 , Part 1August, 1995, p 368-372 Health Supervision for Children With Neurofibromatosis (RE9534) AMERICAN ACADEMY OF PEDIATRICS Committee on Genetics 1. Six or more cafe-au-lait spots (CLS) or macules, greater than or equal to 5 mm in diameter in prepubertal patients and 15 mm in diameter in postpubertal patients; 2. Two or more neurofibromata of any type, or one plexiform neurofibroma; 3. Freckling in the axillary or inguinal region; 4. Optic glioma; 5. Two or more Lisch nodules (iris hamartomas); 6. A distinctive osseous lesion such as sphenoid dysplasia or cortical thinning of long bones, with or without pseudarthrosis; or 7. A first-degree relative (parent, sibling, or child) with NF-1 according to the preceding criteria. COMPLICATIONS GENETICS CLINICAL MANAGEMENT Table ), including the following: 1. Evaluate the child for new neurofibromas and progression of lesions. Examine the skin carefully for signs of plexiform neurofibromas that may impinge on or infiltrate underlying structures. 2. Check the child's blood pressure. Because renal disease (particularly renal artery stenosis), aortic stenosis, pheochromocytomas (more common in adults) and adrenal tumors may occur, regular and careful blood pressure measurements are important. A variety of vascular hypertrophic lesions may be found.

37. Neurofibromatosis Disorders and Stroke, NIH The National Organization for Rare Disorders a searchablesite that includes information on neurofibromatosis GeneClinics a medical http://www.ncbi.nlm.nih.gov/disease/Neurofib.html

This Genes and Disease page has been moved to: Please update your bookmarks. If you are not automatically transported to the new page after 15 seconds, click on this link Genome View on chromosome 22 Databases PubMed the literature LocusLink collection of gene-related information OMIM catalog of human genes and disorders Information Fact sheet from the National Institute of Neurological Disorders and Stroke, NIH The National Organization for Rare Disorders a searchable site that includes information on neurofibromatosis GeneClinics a medical genetics resource NEUROFIBROMATOSIS , type 2 (NF-2) is a rare inherited disorder characterized by the development of benign tumors on both auditory nerves. (acoustic neuromas). The disease is also characterized by the development of malignant central nervous system tumors as well. The NF2 gene has been mapped to chromosome 22 and is thought to be a so-called 'tumor- suppressor gene'. Like other tumor suppressor genes (such as p53 and Rb), the normal function of NF2 is to act as a brake on cell growth and division, ensuring that cells do not divide uncontrollably, as they do in tumors. A mutation in NF2 impairs its function, and accounts for the clinical symptoms observed in neurofibromatosis sufferers. NF-2 is an autosomal dominant genetic trait, meaning it affects both genders equally and that each child of an affected parent has a 50%% chance of inheriting the gene. We are learning more about the function of the NF2 gene through studies of families with neurofibromatosis type 2 and through work in model organisms, particularly mice. The exact molecular function of NF2 in the cell is still unknown, although the protein is similar to the ERM family of cytoskeleton-membrane linker proteins. Further work on the binding partners of NF2 would help to identify potential specific targets for future drug therapies.

38. Neurofibromatosis; Congressionally Directed Medical Research Programs (CDMRP) Vision. Decrease the impact of neurofibromatosis. Mission. neurofibromatosis ResearchProgram Fact Sheet. FY02 neurofibromatosis Research Program Integration Panel. http://cdmrp.army.mil/nfrp/

Vision Decrease the impact of neurofibromatosis Mission Promote research directed toward the understanding, diagnosis, and treatment of neurofibromatosis, as well as enhance the quality of life for persons with the disease Congressional Appropriations for Peer-reviewed Research $90.3 million in FY96-02 $20 million in FY03 Funding Summary 85 awards in FY96-01 Neurofibromatosis Research Program Fact Sheet FY03 Neurofibromatosis Research Program Integration Panel Neurofibromatosis Search NFRP Awards ... Publications Last updated March 24, 2003 (ldm)

39. Genomelink A description of neurofibromatosis, followed by links to research articles, treatment methods, clinical trials and nonprofit organizations. http://www.genomelink.org/neurofibromatosis

40. The Family Village - Neurofibromatosis Library M N. neurofibromatosis. Related Conditions NF1, von Recklinghausendisease. Who to Contact. neurofibromatosis, Inc. (NF, Inc 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 AltaVista for "Neurofibromatosis" Who to Contact Neurofibromatosis, Inc. (NF, Inc.) 8855 Annapolis road, Suite 110 Lanham, Maryland, USA 20706-2924 (410) 461-5213 TTY-TDD Fax: (301) 577-0016 E-mail: NFInc1@aol.com 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. NF, Inc publishes a semi-annual newsletter, Neurofibromatosis Ink , which is free to members and brochures that provide information about the disease and the organization. They also have a new parent packet that includes, the brochure

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