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NF Related Links

I. NF Associations Around the World    Argentina  Australia  Austria  Belgium  Brazil: Associação de Neurofibromatose  Brazil: ACANF  Canada  Colombia  Denmark  France  Germany: Nothing is Forever  Germany: Von Recklinghausen  Great Britian  Ireland  Italy: Associazione Neuro Fibromatosi  Italy: Associazione LINFA  Korea  Malaysia  Mexico  Netherlands  New Zealand  Norway  Peru  Russia  Spain: Asociacion Espanola de Afectados de neurofibromatosis  Spain: Associació Catalana de les Neurofibromatosis  Sweden  Switzerland  Turkey      II. Living with NF   United Health Care Children's Foundation The Foundation provides grants to families to share in the cost of medical services.    NF Bulletin Boards and Chat Rooms  Online discussion groups for people with NF.    Pathways Awareness Foundation  Information for parents of children with movement and physical challenges.    The American Pain Foundation  Source of information and patient support for persons suffering with chronic pain.    Johns Hopkins Department of Radiosurgery  Covering various aspects of radiosurgery.    Harvard Medical School Center for NF and Allied Disorders  Information on NF.    Madison’s Foundation  Online support network for parents of children with rare diseases.    American Brain Tumor Association  Supports brain tumor research, offers patient support.      III. Genetics Information    The University of Alabama at Birmingham Genomics Laboratory  Conducts genetic testing for NF.    University of Utah & the Children's Tumor Foundation Collaboration  Resource to Learn About the Genetics of NF1.    Cold Spring Harbor Laboratory NF Information Page  DNA Learning Center.    American Society of Human Genetics  Links to genetics-related sites, information about the work of the Society.    Alliance of Genetic Support Groups  International coalition that provides information, education, and support to persons affected by genetic disorders.    Gene Tests  Information on genetic testing, genetic counseling services, and management of various genetic disorders.     Hereditary Disease Foundation  Non-profit organization that supports biomedical research.      IV. Neurology    The National Institute of (NINDS)  Supports biomedical research on disorders of the brain and nervous system.    Massachusetts General Hospital/Harvard – Neurosurgery  http://neurosurgery.mgh.Harvard.edu  Information on brain and spinal cord tumors in children.    Child Neurology Foundation  http://www.childneurologyfoundation.org  Advocates for children and adolescents with neurologic and developmental disorders.      V. Deaf/Hard of Hearing Resources    Acoustic Neuroma Association  http://www.anausa.org  Patient support and information related to this condition.    Association of Late-Deafened Adults  http://www.alda.org  International association serving this population with chapter events and national meetings.    The Department of Neurosurgery, at the University of Pittsburgh  http://www.acousticneuroma.neurosurgery.pitt.edu/index.html  Comparing Management Options for Acoustic Neuroma Patients.      VI. Learning Disabilities Resources    Learning Disabilities Online Resource  http://www.ldonline.org    Schwab Foundation for Learning  http://www.schwablearning.org    Wrights Law  http://www.wrightslaw.com    The Federation for Children with Special Needs  http://fcsn.org/index.php    SpanMass  http://www.spanmass.org    Learning Disabilities Association of America - St. Louis Chapter  http://www.ldastl.org    National Council of Learning Disabilities  http://www.ncld.org    Missouri Parents Act (MPACT)  http://www.ptimpact.com    Illinois-ARC Community Support System  http://www.fmptic.org      VII. Other NF Organizations    NF Inc.  http://www.nfinc.org  An NF-focused organization, offering NF information and patient support.    The NF2Crew Website  http://www.nf2crew.org  Online discussion group about all aspects of living with NF2, doctor listings and related links.    Advocure  http://www.advocurenf2.org  Advocure is a working advocacy group for the NF2 Crew.    Texas NF Association  http://www.texasnf.org  An NF Association based in Texas.      VIII. Medical Information Databases    Pubmed  http://www.ncbi.nlm.nih.gov/sites/entrez  A service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s.    MedLine  http://www.nlm.nih.gov/medlineplus  World's largest database of published medical literature.    Biobank Central:  http://www.biobankcentral.org/index.php  Offers cutting-edge info to link the laboratory and patient.       IX. Scholarship Information    Anne Ford Scholarship  http://www.ld.org/awards/afscholarinfo.cfm  The Anne Ford Scholarship is a $10,000 scholarship awarded by the National Center for Learning Disabilities to a high school senior with a learning disability who can act as a role model for others who are faced with learning disabilities and who has the potential of contributing to society in a way that increases opportunities for all people with learning disabilities. The application deadline is December 31.  For more information, write to Anne Ford Scholarship, National Center for Learning Disabilities, Inc., 381 Park Avenue South, Suite 1401, New York, NY 10016-8806 or call 1-212-545-7510.    The Yes I Can! Foundation for Exceptional Children  http://yesican.cec.sped.org/scholarship/index.html  The Yes I Can! Foundation for Exceptional Children offers the Stanley E. Jackson Scholarships and Sara Conlon Memorial Scholarship. Each scholarship is $500 for first year college students with a disability. US citizenship is required. The application deadline is February 1.  For more information, write to Foundation for Exceptional Children, 1110 North Glebe Road, Suite 300, Arlington, VA 22201-5704 or send email to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .    Bank of America Abilities Scholarship Program  http://www.scholarshipprograms.org/bada/bada_2005_ins.htm  This program awards scholarships to students with disabilities (including learning disabilities) who have a career interest in finance, business or computer science, a GPA of at least 3.0 on a 4.0 scale, and who reside in Arizona, California, District of Columbia, Florida, Georgia, Idaho, Illinois, Iowa, Kansas, Maryland, Missouri, Nevada, New Mexico, North Carolina, Oklahoma, Oregon, South Carolina, Tennessee, Texas, Virginia or Washington. For more information, write to Bank of America Abilities Scholarship Program, PO Box 1465, Taylors SC 29687 or call 1-864-268-3363.    Ralph G. Norman Scholarship  http://www.ldaarkansas.org  The Ralph G. Norman Scholarship is offered by the Learning Disabilities Association of Arkansas. The deadline is in early July. For more information, write to Ralph G. Norman Scholarship, LDAA, 7509 Cantrell Road #103 C, Little Rock, AR 72207.    Learning Disabilities Association of Iowa  http://www.lda-ia.org  The Learning Disabilities Association of Iowa awards three $1,000 scholarships to Iowa high school seniors with learning disabilities. The deadline is in mid-March.     P. Buckley Moss Society Harbison Scholarship  http://www.mosssociety.org  The Anne and Matt Harbison Scholarship is awarded by the P. Buckley Moss Society to high school seniors with language-related learning disabilities for college education.  For more information, write to P. Buckley Moss Society, 601 Shenandoah Village Drive, Suite 1C, Waynesboro, VA 22980 or call 1-540-943-5678.    National Society of the DAR/Margaret Howard Hamilton Scholarship  http://www.dar.org/natsociety/edout_scholar.cfm  This award is for $1,000 (renewable for 4 years) for a high school senior who has been accepted to the Ben Caudle Learning Center, University of the Ozarks. For more information, write to NSDAR Administration Building, 1776 D. Street N.W., Washington, DC 20006-5392.     Recording for the Blind/Learning through Listening  This program provides three scholarships of $3,000 each for high school seniors who are learning disabled. The award is based on academic achievement, leadership, enterprise, and service to others. Financial need is not a factor.  For more information, call 1-609-452-0606 or write to Recording for the Blind/Learning through Listening, Attn: Lorraine Grestry, 20 Rozelle Road, Princeton, NJ 08540.     George Bartol Memorial Scholarship Fund   Scholarship for a child, ages 18-23, who has a parent with a brain tumor or who has lost a parent to a brain tumor and attends a 2 or 4 year college, full time.  Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .  Phone: 407-382-5982.    Tim And Tom Gullikson Foundation Scholarship Program  http://www.gullikson.org  Scholarships are given to brain tumor patients/survivors and/or children of brain tumor patients/survivors. Phone: 888-GULLIKSON.    Super Sibs  http://www.supersibs.org  Offers college scholarships for brothers and sisters of children with cancer.  Phone: (866) 444-742.      X. Clinical Trails    ClinicalTrials.gov:  http://www.clinicaltrials.gov  National register of US clinical trials.     Center Watch  http://www.centerwatch.com  Information on clinical trials pertaining to a variety of disorders.     Virtual Trials  http://www.virtualtrials.com  Information on clinical trials involving brain tumor research sponsored by Shering-Plough Pharmaceuticals.    UK Clinical Trials  http://www.controlled-trials.com  Register of clinical trials in the UK.    Australian Clinical Trials Registry  http://www.actr.org.au  Online register of clinical trials being undertaken in Australia.      XI. Government Sites    The US Army NF Program  http://mrmc-rad6.army.mil/nfrp/default.htm    National Institutes of Health  http://www.nih.gov    U.S. Centers for Disease Control  http://www.cdc.gov    U.S. Food & Drug Administration  http://www.fda.gov    Social Security Disability Programs   http://ssa.gov    Federal Legislation Database  http://thomas.loc.gov      XII. Other Websites of Interest    NexGenix  http://nexgenixpharm.com  Biotech company focused on drug development for NF1 & NF2.    EntreMed  http://www.entremed.com  Company dedicated to developing and commercializing angiogenic therapies to potentially treat cancer and blindness.    Worldcare  http://www.worldcare.com  Organization dedicated to providing quality U.S. medical care to patients and doctors residing outside the U.S.    The Virtual Hospital  http://www.vh.org  Online medical library.    AMA Physician Select  http://webapps.ama-assn.org/doctorfinder/home.html  Nationwide physician locator service.    National Organization for Rare Disorders (NORD)  http://www.rarediseases.org  Provides information and patient support for persons with rare disorders.    RxList  http://www.rxlist.com/script/main/hp.asp  Pharmaceutical database.    U.S. Pharmacopeia  http://www.usp.org  USP sets quality standards for manufactures of pharmaceutical and herbal supplements.    MedExplorer  http://www.medexplorer.com  Offers a wide variety of health-related information from nutrition to vision care.    Health Links  http://www.Healthlinks.net  Bulletin boards and discussions groups on all health-related topics.     American Hospital Information Source  http://www.AmericanHospitals.com  Helps international patients find medical resources and information in the United States.    Patient Advocate Foundation  http://www.patientadvocate.org  Provides support to patients seeking to initiate or complete a course of study that has been interrupted or delayed by a diagnosis of cancer or other critical disease.