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Online Resources To suggest additional links or report broken links, contact enichols@gbmc.org. Professional Medical and Genetics Societies Genetics Education Center, University of Kansas Medical Center: One of the best-kept genetics sites on the internet, containing information about and links to most genetic disorders. www.kumc.edu/gec National Organization for Rare Diseases: Hundreds of rare disorders and diseases from 5-oxyprolinemia to Zollinger Ellison syndrome. With links to clinical information, support groups, etc. www.rarediseases.org National Library of Medicine, National Institute of Health, Genetics Home Reference: ghr.nlm.nih.gov/ghr/page/Home Exceptional Parent Magazine: Resources for parents of mentally and/or physically challenged children. www.eparent.com American Academy of Pediatrics: www.aap.org American Board of Medical Genetics: www.abmg.org American Board of Obstetricians and Gynecologists: www.abog.org American Board of Pediatrics: www.abp.org American College of Medical Genetics: www.acmg.net American Society of Human Genetics: www.ashg.org Association of Genetic Technologists: www.agt-info.org Genetics Societies Home Page: genetics.faseb.org/genetics March of Dimes (Maryland Chapter): www.mdmodimes.org Maryland Medical and Chirurgical Faculty: www.medchi.org National Society of Genetic Counselors: www.nsgc.org National Coalition for Health Professional Education in Genetics: www.nchpeg.org Aetna InteliHealth: www.intelihealth.com American Cancer Society: www.cancer.org Behind the Cancer Headlines: Abstracts and lay explanations of cancer research, sponsored free of charge by the Mid-Atlantic Breast Cancer Information Exchange. www.mabcie.com Cancer.com: www.cancer.com Access to more than 200 cancer Web sites operated by leading cancer advocacy organizations, professional societies, treatment institutions, and government agencies. Clinical Trials: www.CancerTrialsHelp.org Gilda's Club: www.gildasclub.org FORCE (Facing Our Risk of Cancer Empowered): www.facingourrisk.org Healing Ribbons: www.healingribbons.net March of Dimes Resource Center: www.modimes.org National Cancer Institute: www.cancer.gov National Women's Health Network: www.nwhn.org The Breast Care Site: "We are dedicated to promoting a healthy lifestyle and positive body image to all breast cancer survivors". www.thebreastcaresite.com Alzheimer’s Association www.alz.org Alzheimer Research Forum www.alzforum.org/home.asp Anxiety Disorders Association of America www.adaa.org Attention Deficit Disorder Association www.add.org Autism/PDD Resources Network www.autism-pdd.net Autism Society of America www.autism-society.org Depression and Bipolar Support Alliance (DBSA) www.ndmda.org Depression and Related Affective Disorders Association (DRADA) www.drada.org Maryland Psychiatric Society www.mdpsych.org Mental Help Net: www.mentalhelp.net Michael J. Fox Foundation for Parkinson’s Research www.michaeljfox.com National Alliance for the Mentally Ill (NAMI) www.nami.org National Alliance for Research on Schizophrenia and Depression (NARSAD) www.narsad.com National Institute of Mental Health www.nimh.nih.gov National Institute of Neurological Disorders and Stroke www.ninds.nih.gov National Institute of Alcohol Abuse and Alcoholism www.niaaa.nih.gov Schizophrenia.com www.schizophrenia.com The National Parkinson Foundation www.parkinson.org Web of Addictions (substance abuse): www.well.com/user/woa The National Organization for Rare Disorders has information on more than 1100 rare diseases, from 5-oxyprolinuria to Zellweger Ellison syndrome. American Association on Mental Retardation: www.aamr.org American Speech-Language-Hearing Association: www.asha.org/default.htm Apraxia-Kids: www.apraxia-kids.org Canavan disease: www.ntsad.org CHARGE Association/Syndrome: www.chargesyndrome.org Chesapeake Down Syndrome Parent Group, Inc.: www.cdspg.org Children's Vision Network: www.childrensvision.com Cleft Lip/Cleft Palate: www.cleftline.org Cornelia deLange Syndrome Foundation: www.cdlsusa.org Craniofacial disorders: www.faces-cranio.org Cystic fibrosis: www.cff.org/ www.cysticfibrosis.com DiGeorge syndrome (velocardiofacial syndrome): www.vcfsef.org Ehlers-Danlos National Foundation: www.ednf.org 5p- (cri du chat) syndrome: www.fivepminus.org Fabry disease: www.ntsad.org Fanconi anemia: www.fanconi.org Federal Resource Center for Special Education: www.dssc.org/frc Fragile X syndrome: www.fraxa.org Gaucher disease: www.ntsad.org Hutchinson-Gilford syndrome (progeria): www.hgps.net Internet Resource for Special Children: A starting point for information about outreach and resources for children with disabilities. www.irsc.org Kabuki syndrome: www.kabukisyndrome.com Klinefelter syndrome: www.47XXY.org Langier-Giedion syndrome: www.lgsa.net Lissencephaly (Miller-Dieker syndrome): www.lissencephaly.org Lysosomal storage disorders (mucopolysaccharidosis and mucolypidosis): www.mpssociety.org March of Dimes: www.modimes.org Marfan syndrome: www.marfan.org Maryland State Department of Education, Division of Special Education and Early Intervention Services: www.cte.jhu.edu/dse_eis Miller-Dieker syndrome (lissencephaly): www.lissencephaly.org Myotonic dystrophy: www.myotonicdystrophy.org National Center on Birth Defects and Developmental Disabilities: www.cdc.gov/ncbddd/dd National Down Syndrome Society: www.ndss.org National Information Center for Children and Youth with Disabilities (NICHCY): Information and referral center that provides information on disabilities and disability-related issues as well as referrals to a wide network of specialized organizations and agencies across the U.S: www.nichy.org Neurofibromatosis (NF): www.nf.org Noonan syndrome: www.noonansyndrome.org Oligosaccharide storage diseases: www.mannosidosis.org Osteogenesis imperfecta (OI): www.oif.org Phenylketonuria (PKU): www.pkunews.org Pierre-Robin syndrome: www.pierrerobin.org Prader-Willi syndrome: www.pwsausa.org Progeria (Hutchinson-Gilford syndrome): www.hgps.net Rett syndrome: www.isn.net/~jypsy/rett.htm Sandhoff disease: www.ntsad.org Sickle cell anemia: www.ascaa.org Special Education and Consulting Alliance: www.spedalliance.com Spina Bifida Association of America: www.sbaa.org Stickler syndrome: www.pierrerobin.org/sticklersyndrome.html Tay-Sachs disease: www.ntsad.org Treacher-Collins syndrome: www.treachercollinsfnd.org Trisomy 18: www.trisomy.org www.trisomyonline.org Trisomy 13: www.trisomy.org www.trisomyonline.org Turner Syndrome Society of the United States: www.turner-syndrome-us.orgNational VATER syndrome: www.tefvater.org Velocardiofacial syndrome (DiGeorge syndrome): www.vcfsef.org Von Hippel Lindau syndrome: www.vhl.org Wiliams syndrome: www.williams-syndrome.org Xeroderma pigmentosum: www.xps.org
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