Helpful Links
The following are links to other organizations that might provide further support and resources. The PND Association assumes no liability for any information contained in any linked site.
Assistive Technology
Abledata National Assistive Technology Database www.abledata.com
Alliance for Technology Access www.ataccess.org
Education
Office of Special Ed Programs (OSEP) www.ed.gov/offices/OSERS/OSEP/index.html
A Guide to the IEP at www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/
Special Education Resources on the Internet (SERI) www.seriweb.com
The Special Ed Advocate www.wrightslaw.com
http://funrsc.fairfield.edu/~jfleitas/contents.html
Financial Entitlements/ Insurance
US Department of Health and Human Services Children's Health Insurance Program
www.insurekidsnow.gov/
SSA Benefits for Children with Disabilities http://www.ssa.gov/pubs/10026.html
Family Voices www.familyvoices.org
Medicaid Waivers (Katie Beckett) www.familyvoices.org/ma-kbw.html
Evaluating Managed Care Plans for children with Special Health Needs: A Purchasers Tool www.ichp.edu/managed/materials/purchaser/
Obtaining Quality Managed Care for Children with Disabilities or Chronic Illnesses: A Resource and Research Guide http://mchneighborhood.ichp.edu/qualitycare/default.htm
Disability/ Chronic Illness
The National Information Center for Children and Youth with Disabilities www.nichcy.org
Family Village www.familyvillage.wisc.edu
Internet Resources for Special Children www.irsc.org
Children with Disabilities www.childrenwithdisabilities.ncjrs.org
Medical
American Academy of Pediatrics www.aap.org
Child Neurology www.waisman.wisc.edu/child-neuro/index.html
Child Neurology Society www.childneurologysociety.org
Dopa Responsive Dystonia Central www.drdcentral.com
HospitalWeb http://neuro-www.mgh.harvard.edu/hospitalweb.shtml
www.medscape.com
National Institute of Health Office of Rare Diseases www.rarediseases.info.nih.gov/
National Institute of Neurological Disorders and Stroke www.ninds.nih.gov
National Organization of Rare Diseases www.rarediseases.org
National Library of Medicine http://www.nlm.nih.gov/nlmhome/html
Society for the Study of Inborn Errors of Metabolism www.ssiem.org.uk/
Genetics
American Board of Medical Genetics www.faseb.org/genetics/
Professional Genetic Societies (Includes International Organizations) www.kumc.edu/gec/prof/soclist.html
National Society for Genetic Counselors www.nsgc.org
The Alliance for Genetic Support Groups www.geneticalliance.org
National Human Genome Research Institute www.genome.gov
Gene Tests www.genetests.org
Parenting
Exceptional Parent Magazine www.eparent.com
National Parent Network on Disabilities www.npnd.org
Sibling Support Project www.thearc.org/siblingsupport/
Recreation/Travel/
Recreation and Leisure Center, Adaptive toys Family Village www.familyvillage.wisc.edu/
National Lekotek Center www.lekotek.org
North American Riding for the Handicapped Association www.narha.org
Transporting Children with Special Health Care Needs www.aap.org/policy/RE9852.html
The Air Care Alliance www.aircareall.org
National Patient Travel Helpline www.patienttravel.org
Mercy Medical Airlift www.mercymedical.org
National Make a Wish www.wish.org
Children Wish Foundation International www.childrenswish.org
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