Neurofibromatosis type 1
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Neurofibromatosis type 1 (NF1) is a disorder of the nervous system that causes tumors to grow around the nerves. Tumors begin in the cells that make up the myelin sheath, a thin membrane that envelops and protects nerve fibers, and often spread into adjacent areas. The type of tumor that develops depends on its location in the body and the kind of cells involved. The most common tumors are neurofibromas, which develop in the tissue surrounding peripheral nerves. Most tumors are non-cancerous, although occasionally they become cancerous over time. NF1 is the most common form of neurofibromatosis, occurring in 1 in 3,000 to 4,000 individuals in the United States.[1]
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- More Information (Found: 13 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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The National Human Genome Research Institute's (NHGRI) mission encompasses a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. Click on the link to view the information page on this topic.
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MedlinePlus, a Web site designed by the National Library of Medicine Web site to help you research your health questions, provides more information about this topic. Click on the link to view this information.
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The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Neurofibromatosis type 1. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Neurofibromatosis type 1. Click on the link to go to PubMed and review citations to these articles.
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Genetics Home Reference (GHR) contains a condition summary on Neurofibromatosis type 1. Click on the link to go to GHR and review this summary.
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The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), has an information page on neurofibromatosis type 1. To read more about neurofibromatosis type 1, visit the following link: http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Toll-free: 800-352-9424
Phone: 301-496-5751
TTY: 301-468-5981
E-mail form: http://www.ninds.nih.gov/contact_us.htm
Web site: http://www.ninds.nih.gov/
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More information on neurofibromatosis can also be found at the following link from MEDLINEplus, the National Library of Medicine Web site designed to help you research your health questions.
http://www.nlm.nih.gov/medlineplus/neurofibromatosis.html
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The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), has an entry on neurofibromatosis in its talking glossary. To listen to a detailed explanation of neurofibromatosis, visit the following link:
http://www.genome.gov/glossary.cfm?key=neurofibromatosis
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You can obtain comprehensive information on neurofibromatosis from the National Cancer Institute Cancer Information Service (CIS). CIS provides the most current information on cancer for patients, health professionals, and the general public.
Public Inquiries Office
Cancer Information Service Branch
Room 3036A
6116 Executive Blvd., MSC 8322
Bethesda, MD 20892-8322
Toll free: 800-4-CANCER (within the United States)
Web site: http://cis.nci.nih.gov
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For a comprehensive review of NF1, you can visit GeneReviews. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link below for the information on NF1.
http://www.geneclinics.org/profiles/nf1/
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An article from eMedicine Journal provides information on neurofibromatosis at the following link. You may need to register to view the article, but registration is free.
http://www.emedicine.com/orthoped/topic525.htm
- Support Groups (Found: 8 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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The Neurofibromatosis Association
Quayside House
38 High Street, Kingston-on-Thames
SURREY KT1 1HL
Phone: 44(0)208 439 1234
Fax: 44(0)208 439 1200
E-mail: nfa@zetnet.co.uk
Web site: http://www.nfauk.org
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The Children's Tumor Foundation
95 Pine Street, 16th floor
New York, N.Y. 1005
Telephone: (212) 344-6633
Toll Free: (800) 323-7938
E-mail: info@ctf.org
Web site: http://www.ctf.org/
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Neurofibromatosis, Inc.
P.O. Box 18246
Minneapolis, MN 55418-0246
Toll-free: 1- 800-942-6825 (within the United States)
Phone: 301-918-4600
Web site: http://www.nfinc.org
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The British Columbia Neurofibromatosis Foundation
203-1001 Cloverdale
Victoria, BC, Intl V8X 4C9
Phone: 205-370-7597
Web site: http://www.bcnf.bc.ca
- Live Chat
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Research & Clinical Trials (Found: 2 Resources)
Resources where you may find research studies and clinical trials
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ClinicalTrials.gov lists trials that are studying or have studied Neurofibromatosis type 1. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
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The National Cancer Institute (NCI), part of the National Institutes of Health (NIH), is conducting research on treatment to slow tumor progression in children with neurofibromatosis type 1. Click on the following webpage to read more about the study and on neurofibromatosis in children:
http://www.cancer.gov/clinicaltrials/ft-NCI-01-C-0222H
- Services (Found: 3 Resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Ask-an-Expert
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You can chat online with a specialist at the National Cancer Institute (NCI) on Monday through Friday from 9:00 a.m. to 11:00 p.m. Eastern Standard Time. Click on the following link and then click again on the icon named 'LiveHelp' to start chatting.
https://cissecure.nci.nih.gov/livehelp/welcome.asp
- Healthcare Professional Online Directory
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The Children's Tumor Foundation (CTF) has developed a online directory that can direct you to physicians that have experience with neurofibromatosis. To locate a physician, click on the CTF link. Alternatively, you can get help with a physician referral by contacting Corinne McGown via email: cmcgown@ctf.org or phone: (212) 344-6633 x 227.
- Genetic Services
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We recommend that you discuss this information and your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
* GeneClinics - A searchable directory of US and international genetics and prenatal diagnosis clinics. To locate genetics clinics in the United States, go to the following link and click on 'Clinic Directory' to find a genetic service close to you.
* ResourceLink - A database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty. Hosted by the National Society of Genetic Counselors.
- More Search Tools (Found: 1 Resources)
Resources to help you find more information on this topic
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The NLM Gateway allows users to search across multiple resources offered on the National Library of Medicine's Web site. Some of these resources may be duplicated in the list of links above. Click on the link to go to the NLM Gateway, and search by condition name.