41. Neurofibromatosis Resources Links, with reviews, to information about neurofibromatosis 1 (Von Recklinghausen's disease. Personal pages. 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)

42. GeneReviews: Neurofibromatosis 1 Your browser does not support HTML frames so you must view neurofibromatosis 1 in a slightly less readable form. Please follow this link to do so. http://www.geneclinics.org/profiles/nf1/

Your browser does not support HTML frames so you must view Neurofibromatosis 1 in a slightly less readable form. Please follow this link to do so.

43. GeneReviews: Neurofibromatosis 2 Your browser does not support HTML frames so you must view neurofibromatosis 2 in a slightly less readable form. Please follow this link to do so. http://www.geneclinics.org/profiles/nf2/

Your browser does not support HTML frames so you must view Neurofibromatosis 2 in a slightly less readable form. Please follow this link to do so.

44. The NF2Crew - NF2 Support Online discussion group for people with neurofibromatosis 2. http://www.nf2crew.org

The NF2Crew Members Log In: UserId: Password: Lost UserID/Password Home Mailing Lists Message Board ... 3 upcoming NF symposiums in Oct. 2005 The NF2 Crew is an online based support group for Patients and Families with Neuofibromatosis Type II. We are one of the largest NF2 based support groups in existance with over 200 members spanning the globe. Our "meetings" are held via e-mail (this especially works well as many with NF2 are Deafened or Hard of Hearing) along with occasional "Crew meetups" where members get together to meet in person Every member is either directly related to someone with NF2 or has NF2 themselves, though it can affect different people in different ways, one of the expressions we often hear from new members is "Wow, there is someone out there whose like me!" We share information on doctors, hospitals and treatments; as well as Non "tumor-talk" when you just need a break from NF2. Anything said is considered confidential, if a Crew member just needs to vent, share something of a personal nature or just ask a question, we want them to feel this is a safe haven. In memory of Jordan Harlow one of the Crew Founders Last Updated: 09/01/2005.

45. Neurofibromatosis/ Family Village Library neurofibromatosis, Inc. is dedicated to individuals and their families who are affected by formerly known as the National neurofibromatosis Foundation 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 Children's Tumor Foundation formerly known as the National Neurofibromatosis Foundation 95 Pine Street 16th Floor New York, NY 10005

46. NexGenix HomePage Drug therapies for the treatment of two genetic disorders neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). Find overviews, clinical trials and news. http://www.nexgenixpharm.com

47. Neurofibromatosis This ring promotes neurofibromatosis education, enlightenment, and encouragement. It is open to NF organizations, medical sites, and personal homepages. http://r.webring.com/hub?ring=neurofibroma&list

48. NF TEAM Dedicated to promoting awareness of neurofibromatosis. It also contains the latest research as well as fund raising programs (Marathons, racing, walking, etc) that raise money towards NF research. http://www.racefornfresearch.com

var TlxPgNm='index'; NF in the NEWS: CMU Senior Runs for NF! This website is dedicated to my eight-year-old cousin Shannon and the estimated 1.5 million people worldwide who suffer from Neurofibromatosis. Please take a moment to sign my Guest Book. Your thoughts and comments are appreciated. Thank You! Other Links Alternative Medicine Page NF TEAM Introduction Mission What is Neurofibromatosis? Contact me ... Guestbook Our NF Marathon Team Who's missing from this picture? You are! Currently there is no cure or effective treatment for NF. Our mission is to help change that but we need your help. Are you ready to make a difference? We need runners, walkers, and volunteers. You can join us or sponsor one of our teammates We'll be at the Walt Disney World Marathon on January 9th 2005. This would be a great time to take that family vacation. Come on out and cheer us on! (Click here to meet some of our teammates)

49. NF1 Gene And Neurofibromatosis 1, NCBDDD, CDC Information on autism. Provided by the US Centers for Disease Control Prevention. http://www.cdc.gov/node.do/id/0900f3ec80007069

Home About CDC Press Room Funding ... Contact Us Search: Birth Defects Birth Defects Home Research Key Findings NF1 Gene and Neurofibromatosis 1 CDC scientists reviewed population-based epidemiologic information on the gene and neurofibromatosis 1. Neurofibromatosis 1 (NF1), also known as von Recklinghausen disease, is caused by mutations of the gene, which is located at chromosome 17q11.2. A wide variety of mutations have been found in patients with NF1. No frequently recurring mutation has been identified. Diagnosis of NF1 is based on established clinical criteria. Average life expectancy of patients with NF1 is probably reduced by at least 10 to 15 years, with malignancy as the most common cause of death. Substantial variability in expression of NF1 features occurs, even in affected members of a single family. Laboratory testing for mutations is difficult. A protein truncation test is commercially available, but its sensitivity, specificity, and predictive value have not been established.

50. Neurofibromatosis Clinics Association - Volunteer Opportunities Details of many ways to volunteer to help the neurofibromatosis Clinics Association. http://www.nfpittsburgh.org/volunteer.html

Home What's NF About NFCA Clinic Info ... Links Volunteer Opportunities Opportunities exist in several areas: Fundraising Events Committees Special Programs Administrative functions For more information on volunteering with the NFCA, please call (412) 795-3029 or email us at info@nfpittsburgh.org NF Research Support Group Contact ... Upcoming Events

51. Genomics|HuGENet|Reviews|NF1 Gene And Neurofibromatosis Type 1 The mission of the Office of Genomics and Disease Prevention is to integrate advances in human genetics into public health research, policy, and programs. http://www.cdc.gov/genomics/hugenet/reviews/nf1gene.htm

home reviews NF1 Gene and Neurofibromatosis Type 1 Archived: Jan 2000 This article was published with modifications in Am J Epidemiol 2000 Jan 1;151(1):33-40 PubMed ID: NF1 Gene and Neurofibromatosis Type 1 Sonja A. Rasmussen and J.M. Friedman Centers for Disease Control and Prevention, Division of Birth Defects and Pediatric Genetics, Atlanta, GA Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada Updated August 31, 1999 Abstract Gene Gene Variants Disease ... Medical Literature Search ABSTRACT Neurofibromatosis 1 (NF1), also known as von Recklinghausen disease, is caused by mutations of the NF1 gene, which is located at chromosome 17q11.2. The protein product, neurofibromin, has tumor suppressor activity and probably other functions as well. A wide variety of NF1 mutations have been found in patients with NF1. No frequently recurring mutation has been identified. No information is available currently on the distribution of NF1 mutations in different populations. Average life expectancy of patients with NF1 is probably reduced by at least 10 to 15 years. Malignancy is the most common cause of death, but hypertension appears to be significantly associated with mortality. Primary prevention of NF1 complications is not currently possible.

52. The Texas Neurofibromatosis Foundation Texas neurofibromatosis Foundation supports individuals and families in Dallas, Houston, Austin, and San Antonio. Creating events to raise money and support 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

53. Neurofibromatosis Genes and disease provides short descriptions of inherited disorders. It is hosted by the National Center for Biotechnology Information (NCBI), 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.

54. OMIM - NEUROFIBROMATOSIS, TYPE I; NF1 http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=162200

55. Neurofibromatosis neurofibromatosis (NF) is a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities. Learn more about NF, http://kidshealth.org/parent/system/ill/nf.html

KidsHealth Parents Caring for a Seriously or Chronically Ill Child Neurofibromatosis (NF) is a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities. NF is often diagnosed in childhood, occasionally in infancy but usually around 3-16 years of age. The effects of the disease vary widely. Some children might live almost unaffected by the condition. Although rare, others might be severely disabled. Children with more severe forms of the disorder are usually diagnosed in infancy. Although there's no specific cure for NF, tumors can usually be removed and related complications can be treated. Children with NF may need special schooling because learning disabilities are seen in about half of children with the disease. What Is Neurofibromatosis? Neurofibromatosis is a neurocutaneous syndrome , it's passed down through the parents' genes, and it affects the brain, spinal cord, nerves, and skin. Neurofibromatosis is defined by tumors, called neurofibromas Neurofibromas can often be removed. Although usually benign (noncancerous), they can sometimes become cancerous (in an estimated 5% of cases). There are two types of neurofibromatosis, referred to as

56. Neurofibromatosis Research Program, Congressionally Directed Medical Research Pr neurofibromatosis (NF) includes two distinct genetic disorders of the nervous system, NF1 and NF2. These disorders usually result in tumors involving nerves http://cdmrp.army.mil/nfrp/default.htm

Home Site Map Contact Us Funding Innovation - Finding A Cure - Providing Hope Research Programs Funding Opportunities Consumer Involvement Search Awards ... Research Programs Search Site: Neurofibromatosis 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 Funding Opportunities Search Awards Integration Panels Peer Review Participants ... Related Neurofibromatosis Links Congressional Appropriations $130.3 million in FY96-04 $25 million in FY05 Research Program Fact Sheet Funding Summary 117 awards in FY96-03 approximately 21 awards in FY04 Neurofibromatosis News Funds for FY06 pending availability. More News... Research Highlights Coming Soon! Previous Highlights... Storyboards The NFRP has developed storyboards depicting key advances in NF1 and NF2 basic and clinical research. Each storyboard provides a graphic representation of particular research areas such as cellular biology or experimental therapeutics. Major breakthroughs in each research area are displayed on a timeline from pre-1995 through 2005. NF1 Story Board (Adobe PDF file) NF2 Story Board (Adobe PDF file) CDMRP Home Site Map ... About Us Last updated August 23, 2005 (ldm)

57. Neurofibromatosis neurofibromatosis neurofibromatosis takes two different forms, type 1 (NF1) and type 2 (NF2). One abnormal gene causes each form. Diagnosis. http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=402&topcategory=Children

58. Neurofibromatosis Society Of Ontario: Neurofibromatosis Society Of Ontario - Res The neurofibromatosis Society of Ontario is proud to host their first medical symposium. Please feel free to download our registration form here. http://www.nfon.ca/

Your browser does not support script The NF Society of Ontario is an organization made up of volunteers providing support and services to NF families. In addition to assisting individuals and families, the NF Society of Ontario works closely with clinical and research professionals who specialize in the treatment of NF. The Neurofibromatosis Society of Ontario is proud to host their first medical symposium. Please feel free to download our registration form here. Click here: Download Registration Form as a .PDF 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: Toll Free: 1-866-THE-NFSO or 866-843-6376 Neurofibromatosis Society of Ontario 180 Circle Lake Road North Bay, Ontario NF Information Support Services Get Involved News Centre ... "upnorthwebs.com"

59. Neurofibromatosis neurofibromatosis information and links to national and international support groups, clinics with genetic counselors and geneticists. 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

60. Neurofibromatosis Type 1 (NF1) Information about neurofibromatosis Type 1. Page Title neurofibromatosis Association of Australia Inc. Association Logo Skip Menu Home Page http://www.nfaa.org.au/resources/nf1.html

[Skip Menu] Home Page About Us News ... What's New? Neurofibromatosis Type 1 (NF1) The commonest form of NF is NF1 which affects about 1 in 3,500 people. The gene affected in NF1 is located on chromosome 17. What are the common features of NF1? multiple cafe-au-lait (milk coffee coloured) skin spots - people with NF1 usually have at least 6 or more. They can occur anywhere on the skin, are harmless and never cause any medical problems. freckling in unusual sites such as the armpits or groin. neurofibromas - small, benign lumps which grow around small nerves. They develop in or under skin, and may, gradually increase in number throughout life. Some people have only a few, others many more. Lisch nodules - tiny lumps which develop in the coloured part of the eye (iris), and can usually only be seen with a special microscope (slit lamp). They do not affect vision and do not cause any other problems, but they are a useful clue to doctors that a person has NF1. Complications of NF1 Each person with NF1, even within the same family can be affected to a different extent. Many people only develop skin changes and Lisch nodules, which are harmless. 20-40% of people will develop a medical problem related to NF1 which may require treatment. The commonest important complications are: plexiform neurofibromas: larger lumps involving a group of nerves. They can occur in or under the skin or internally. Large plexiform neurofibromas are difficult to completely remove surgically. Occasionally, plexiform neurofibromas can become cancerous.

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