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Neurofibromatosis Resources
Neurofibromatosis, Inc.www.nfinc.org
University of Chicago www.uchospitals.edu/peds-neurology/neurofibromatosis/
Harvard Medical School Ctr for NF www.understandingnf1.org
Massachusetts General Hospital http://neurosurgery.mgh.harvard.edu/NFclinic
Washington University at St. Louis www.neuro.wustl.edu/neurogenetics
National Library of Medicine www.nlm.nih.gov (click on "PubMed")
Office of Rare Diseases http://rarediseases.info.nih.gov
National Organization for Rare Disorders www.rarediseases.org
General
Proteus Syndrome www.proteus-syndrome.org
Epilepsy Foundation of America www.efa.org
Genetic Alliance www.geneticalliance.org
Learning Disabilities
Bullying and the Young Child www.childhealthalert.com
Disability Etiquette Booklet by Judy Cohen Booklet in pdf format
Learning Disabilities www.fln.vcu.edu/ld/ld.html
Learning Disabilities Association of America www.ldanatl.org or 412-341-1515
Moyamoya ¨C Having received a few recent requests for information about moyamoya I have included some links here
General Information wikipedia
Stanford University Hospital Stanford University Hospital Clinics
National Institutes of Health NIH
Health Coverage
Neurofibromatosis Insurance Information Diagnostic Codes
" A Consumer's Guide for Getting & Keeping Health Insurance" www.healthinsuranceinfo.net
Children Without Health Insurance http://coveringkidsand families.org or 202-338-7227
National Patient Advocate Foundation www.patientadvocate.org or 800-532-5274
Social Security Benefits Denied 1-800-431-2804 to locate an attorney in your state
Medicare Resources (all downloadable)
Yearly Medicare Enrollment Review
Prescription Drug Savings
Color coded letters from Medicare
When a Medicare Claim is Denied
Scholarship/Financial Aid
College Search & Guide Site www.collegeispossible.org
Fast WEB www.fastweb.com or 1-800-FASTWEB
Federal Student Aid Information 1-800-433-3243
Financial Aid Information Page www.finaid.org
Free Online Scholarship Search www.acenet.edu
Scholarship Resource Network www.srnexpress.com
The College Board www.collegeboard.org
U.S. Dept. of Education http://studentaid.ed.gov Student Guide to Financial Aid.