RESOURCES ON THE WEB
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RESOURCES ON THE WEB RESOURCES ON THE WEB Document Transcript

  • RESOURCES ON THE WEBThe MAGIC Foundation does not endorse these websites and is not responsible for information theymay contain. They are included as possible resources to help you because there is SO much outthere! We strongly recommend that you discuss your concerns with a qualified medical professionalbefore making any changes in your health care, or related issues. If you see a link which does notwork, please let us know. Thank you.A great new site with tons of resources organized for special needs children is: One Place forSpecial Needshttp://www.oneplaceforspecialneeds.com/resources/resource_results.html?words=magicAlliance of Genetic Support Groups, http://www.geneticalliance.orgAmerican Academy of Pediatrics, http://www.aap.org/American Healthcare Foundation, kidney disease issues, americanhealthcarefoundation.orgAmerican Society for Clinical Nutrition, www.nutrition.org American Society for ClinicalNutrition,American Society for Parenteral & Enteral Nutrition, www.clinnutr.orgAntiphospholipid Antibody Syndrome, www.apsfa.org.Associaton of Birth Defect Children, www.birthdefects.orgAssociation for Vascular Assess (AVA); www.avainfo.orgBig Sky - Autism Spectrum Advocacy and Intervention in Texas; www.bigskyfarm.4t.comCanadian Parenteral-Enteral Nutrition Association; www.cpena.caCombined Health Information Database, www.chid.nih.govDietitians in Nutrition Support, www.dnsdpg.orgFree Online Access to Medical Articles (Medline), www.ncbi.nlm.nih.gov/entrez/query.fcgiMerk Manual, http://www.merck.com/mmpe/index.htmlEuropean Society for Parenteral & Enteral Nutrition, www.espen.org* HealthyLinking.com is a leading health directory including animal health, beauty, fitness, healthinsurance, long term care, mental health, medication, nursing, pharmacy, nutrition and much more.Infusion Nurses Society, www.ins1.orgInternet Public Library, http://www.ipl.org.ar/cgi-bin/ref/aon.out.pl?ty=long&id=hea52.00.00League of Intravenous Therapy Education, www.lite.orgNational Board of Nutrition Support Certification, www.nutritioncertify.orgNational Home Infusion Association, www.nhianet.orgAmerican College of Gastroenterology, www.acg.gi.orgAmerican Dietetic Association, www.eatright.orgNational Organization for Rare Disorders, www.rarediseases.orgAmerican Society for Gastrointestinal Endoscopy, www.asge.orgAmerican Society of Colon & Rectal Surgeons, www.fascrs.orgDigestive Disease National Coalition, www.ddnc.orgNatl Institute of Diabetes & Digestive and Kidney Diseases, www.niddk.nih.govAmerican Society for Clinical Nutrition www.ascn.orgEuropean Society for Parenteral & Enteral Nutrition, www.espen.orgExceptional Parent Magazine, eparent.comNational Library of Medicine- NIH, http://www.nlm.nih.gov/National Lipid Association, http://www.lipid.org/NIH- Osteoporosis & Related Diseases, http://www.osteo.org/Adrenal ResourcesThe Stanford Health Libraryhttp://healthlibrary.stanford.edu/resources/internet/bodysystems/endocrine_adrenal.html
  • Childrens and Womens Health Center,http://www.bcchildrens.ca/Services/SpecializedPediatrics/EndocrinologyDiabetesUnit/ForFamilies/EndocrineLinks.htm#adrenalGastrointestinal ResourcesAmerican Gastroenterology Association,www.gastro.orgAmerican Liver Foundation, http://www.liverfoundation.org/Center for Disease Control, www.cdc.govChrons and Colitis Foundation of America, http://www.ccfa.org/Healthfinder, www.healthfinder.govHepatitis.org, http://www.hepatitis.org/Hepatitis B Coalition, http://www.immunize.org/Information on Clincial Trials and Human Research Studies,clinicaltrials.gov/ct/guiInternational Foundation for Functional Gastrointestinal Disorders, http://www.iffgd.org/Integrative Medicine (a holistic website), www.mskcc.org/aboutherbsNo. Am. Society for Pediatric Gastroenterology Hepatology and Nutrition,www.naspghan.orgPancreas.org, http://www.pancreas.org/The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition,http://www.naspghan.org/The Gastro-Intestinal Research Foundation of Chicago, http://www.girf.org/The Hormone Society, http://www.hormone.org/endo101/ (excellent basic info)Gastroparesis and Dysmotilities Association, http://www.digestivedistress.com/ The NorthAmerican source for information on nerve and muscle disorders within the gut (akafunctional or motility problems). GPDA offers a refreshing, scientific-based, focus toreassure you that these problems of digestive distress are not just "your imagination".Higher Educational ResourcesTeen education opportunities and resources; aim is to help candidates aspiring for higher educationby providing them all the information they need in order to make a right academic decision. Hereyou will get extensive information on various leading universities and colleges, as well as assistanceon getting educational loans.Endocrinology/GeneticsAmerican Association of Clinical Endocrinologists, http://www.aace.com/American Board of Genetic Counciling, http://www.abgc.net/American Board of Medical Genetics, http://www.abmg.org/American College of Medical Genetics, www.acmg.netAmerican Diabetes Association, http://www.jdrf.org/American Society of Human Genetics, www.gaseb.org/genetics/ashgmenu.htmThe Endocrine Web, http://www.endocrineweb.com/whatisendo.htmlEndocrine Society, http://www.endo-society.org/Endocrine Nurses Society, www.endo-nurses.orgGrowth Genetics and Hormones, medical journal, http://www.gghjournal.com/index.cfmJuvenile Diabetes Research Foundation, http://www.jdrf.org/Lawson Wilkins Pediatric Endocrine Society, http://lwpes.org/National Society of Genetic Counselors, http://www.nsgc.org/Pediatric Endocrine Nurse Society, http://www.pens.org/Pediatric Academic Societies (PAS), www.pas-meeting.orgPituitary, basic information, http://www.hormone.org/learn/pituitary.htmlPolycystic Ovarian Syndrome Association, http://www.pcosupport.org/Endo text- medical articles online, great source!, http://www.endotext.org/GeneTests/GeneClinics, www.geneclinics.orgHuman Gene Mutation Database, http://archive.uwcm.ac.uk/uwcm/mg/hgmd0.htmlJuman Genome Project Reference Sequence, http://genome.ucsc.edu/National Center for Biotechnology Information (NCBI), www.ncbi.nih.gov/Medical Air Transport Services:www.airlifeline.org/http://www.patienttravel.org/www.mercymedical.org
  • Angel Flight flight http://www.angel-flight.org/ or for region specifichttp://www.angelflightse.org/Canadian assistance: www.hopeair.org Mental HealthUnmet Needs of Children With Chronic Health Conditions,http://pediatrics.aappublications.org/cgi/content/full/105/1/S2/277http://www.allaboutkids.umn.edu/kdwbvfc/FamilyMonograph.PDFBandaides and Blackboards- a site about growing up with medical problems (excellent)TEENSVIDEOs- Free to U.S. small fee/donation for International requestsBack to School: Teens Prepare for School Re-entry,http://www.starbright.org/projects/vwa/index.htmlPlastic Eggs or Something!?" Cracking Hospital Life,http://www.starbright.org/projects/vwa/index.htmlWhat am I Chopped Liver?: How to stay actively involved with your doctor.,http://www.starbright.org/projects/vwa/index.htmlOtherMedical Home Initiatives for Children with Special Needs www.medicalhomeinfo.orgNational Institute of Health, health.nih.govUS Department of Health and Human Services, www.hhs.govUS National Library of Medicine, www.nlm.nih.govList Site of Helpful Resources,http://www.state.sc.us/ddsn/service/sectionthree/section3education.htmlLimitless Sports Organization, www.limitlesssports.orgw FDA Insurance / Disability Benefits & ResourcesFirst Hand Foundation www.firsthandfoundation.orgHealth Care Financing Administration, www.hcfa.govHealth and Human Services, www.os.dhhs.govHealth Insurance Resource Center (includes links to high-risk health insurance pools)www.healthinsurance.orgMedicaid: State by State Descriptions & Plans, 64.82.65.67/medicaid/states.htmlMedicare, www.medicare.govNational Health Law Program, www.healthlaw.orgPatient Advocate Foundation, www.patientadvocate.orgShriners Hospital, Springfield, MA- At Shriners Hospital, children up to 18 years of age withcongenital or acquired problems of the bones, muscles and joints receive comprehensive care provided atno charge to family, insurance or government agency. For an appointment you may call 1-413-735-1234n Social Security Administration, www.ssa.govSocial Security Work Site www.ssa.gov/workw Transportation Security Administrationocial(Information for travellers with disabilities and medical conditions)www.tsa.gov/public/display?theme=156Patient Advocate Center- www.patientadvocate.org (help with many issues)Clinical Trials ResourcesClinical Trials searchable databaseClinical Trials, by the National Institutes of Health, www.clinicaltrials.gov Disease / Condition Specific Organizations and Family pages22q11 deletion syndrome, www.cbil.upenn.edu/VCFS/22qandyou/Aarskog Syndrome,http://healthcontent.westernbaptist.com/adamcontent/ency/article/001654.aspAmerican Cancer Society, www.cancer.orgAmerican Liver Foundation, www.liverfoundation.orgAmerican Pseduo-Obstruction & Hirschsprungs Disease Society,http://www.tiac.net/users/aphs/American Society of Clinical Oncology, www.asco.orgAngelman Syndrome, http://www.angelinfo.org/ or www.angelman.org
  • Autism, Big Sky - Autism Spectrum Advocacy and Intervention in Texaswww.bigskyfarm.4t.comAutism, www.canfoundation.orgAttention Deficit Disorder, over 100 articles written by national ADHD authorities as well asadults with ADHD. Plenty of information for parents too. 100 plus links to ADHD-related websites.Includes the National ADHD Directory with over 1000 ADHD Service Providers listed as well as aNational ADHD Events Calendar. Free monthly eNews available. Additional benefits with $45 annualmembership.Birthmarks, www.birthmarks.orgBrain Injury Group-Hope through Treatment, www.brightonline.orgCancer Care, www.cancercare.orgCeliac Disease Foundation, www.celiac.orgCeliac Sprue Association/USA, Inc., www.csaceliacs.org/Cerebral Palsy Parent Home Page, www.cpparent.orgCharge Syndrome, http://www.chargesyndrome.org/Chromosome Deletion Outreach, www.chromodisorder.orgChromosome Disorder Support Group (rare): www.rarechromo.orgConnexin-deafness, www.crg.es/deafnessCornelia de Lange Syndrome, http://www.cdlsusa.org/sitemap.htmlCostello Syndrome, www.costellokids.co/uk/welcome.htmCrohns and Colitis Foundation of America, www.ccfa.orgCyclic Vomiting Syndrome Association, www.cvsaonline.orgDysautonomia Foundation, Inc., www.familialdysautonomia.orgDiGeorge Syndrome, www.caringbridge.com/de/harleysdigeorgepageEA/TEF Children & Family Support Connection, www.eatef.orgEpilepsy (infancy) Infantile Spasms Advice- Description : "One Stop Shop" for informationon infantile Spasms / West Syndrome. Advice on thwe condition, treatment, medicationsand research. url : http://www.infantile-spasms.orgFamilial Dysautonomia Hope, www.fdvillage.orgGastroparesis, www.gpda.netGastroparesis Patient Association for Cures & Treatments, www.g-pact.orgGluten Intolerance Group, www.gluten.netHallorvorden-Spatz syndrome/ PANK 2 NBIA Disorders, www.hssa.orgHepatitis Foundation International, www.hepfi.org/Hypoparathyroidism, http://www.endotext.org/endotextsearch/search.cgi?zoom_query=hypoparathyroidism&zoom_per_page=10&zoom_cat=-1&zoom_and=0&zoom_sort=0 International Foundation for Functional GI Disorders, www.iffgd.orgIrritable Bowel Disease Page, www.panix.com/~ibs/Intestinal Pseudo-Obstruction, www.ki.se/medhs/gastro/psob/main.htmlKidney MD, see American Healthcare Foundation, links@americanhealthcarefoundation.orgLance Armstrong Foundation for Cancer Patients, Caregivers and Survivors (includes links to nutrition info under "Suvivorship/Resources") www.laf.orgLissencephaly Network, Inc. www.lissencephaly.orgPrader Willi Syndrome www.pwsausa.org www.prader-willi.orgSmith-Magenis Syndrome, www.smithmagenis.orgSotos Syndrome, www.well.com/user/sssa/West Syndrome/Infantile Spasms, www.wssg.org.ukWilliams Syndrome, www.wsf.orgList of Rare Diseases, www.rarediseases.info.nih.gov/ord/diseases.htmlNational Disease Centered Organizationsdir.yahoo.com/health/diseases_and_conditions/organizationsNational Organization for Rare Disorders (NORD), www.rarediseases.org/Obesity, http://www.hormone.org/learn/obesity.htmlOffice of Rare Disorders, www.rarediseases.info.nih.gov/ord/Organic Acidemia Association, www.oaanews.orgOrthopedics of all kinds- listing site, http://owl.orthogate.org/orthpat.htmlPaget Foundation, http://www.paget.org/
  • Prader Willi, www.pwsausa.orgPediatric/Adolescent Gastroesophageal Reflux Association, www.reflux.orgPediatric Crohns & Colitis Association, pcca.hypermart.netPeople Living with Cancer, www.plwc.orgPropionic Acidemia Foundation, www.pafoundation.com/pages/869028/index.htmRett Syndrome, www.rsrf.orgSAFE, Inc. (supporting Autism & Families), www.autismsafe.orgThe Guardian Society (motility disorders), www.guardiansociety.comThe National Adrenal Diseases Foundation, http://www.medhelp.org/nadf/The National Eosinophilic Enteritis Disease Foundation, c4isr.com/NEEDThe Vater Connection, www.vaterconnection.orgThyroid List, Womens and Childrens Center,http://www.cw.bc.ca/endodiab/endolink.asp#thyroidTransplant Living, www.transplantliving.orgUnited Mitochondrial Disease Foundation, www.umdf.orgUnited Network for Organ Sharing, www.unos.orgUnited Ostomy, www.uoa.orgWilliams Syndrome, http://www.williams-syndrome.org/Resources for ParentsBandaides and Blackboards, funrsc.fairfield.edu/~jfleitas/contents.htmlCanyon Ranch (Resort for chronically ill youth late teens, early 20s)www.dreamsteetfoundation.orgChildrens Medical Organizer, www.childrenshc.org/cmo/Double H Hole-in-the-Woods Ranch (summer camp that accepts kids on HPEN)www.doublehranch.orgExceptional Parent Magazine, www.exceptionalparent.comFamily Voices, www.familyvoices.orgFlorida Institute for Child Health Care Policy, www.ichp.eduHealth Care Transitions, hctransitions.ichp.eduMake-A-Wish Fundation (Grants wishes for chronically ill children), www.wish.orgMothers United for Moral Support, www.netnet.net/mums/National Information Center for Children and Youth, www.nichcy.orgNew Visions (workshops on oral feeding skills), www.new-vis.comParent Educational Advocacy Training Center, www.peatc.orgSNAP Online, www.snapinfo.orgSupport for Adult Sibling/Child Siblings of People with Special Needs,www.thearc.org/siblingsupportThe Painted Turtle (offers summer camp experience for kids with IBD)www.thepaintedturtle.org/turtlePublic Medicine, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmedSupport for Adult Sibling/Child Siblings of People with Special Needs, The Painted Turtle(offers summer camp experience for kids with IBD) Public MedicineCaregiver ResourcesAARPs Caregiving Webplace, www.aarp.org/indexes/health.html#caregivingCaregiving Online (charges fees for some services) www.caregiving.com/index.htmlTips for Caregivers www.caregiving.com/support/html/freetips.htmWays to Help A Caregiver www.caregiving.com/support/html/helpcare.htmCaregiver Network, www.caregiver.on.ca/Caring from a Distance (for long distance caregivers), www.cfad.orgWell Spouse Foundation, www.wellspouse.org/information.htmlSchool-Based Health CentersNational Assembly on School-Based Health Care, www.nasbhc.orgBureau of Primary Health Cares Healthy Schools, Healthy Communities,www.bphc.hrsa.gov/HSHCNational Association of Community Health Centers, www.nachc.com
  • School Health - GeneralAmerican School Health Association, www.ashaweb.orgCenters for Disease Control, www.cdc.gov/nccdphp/dashNational Association of School Nurses, www.nasn.orgNational Association of State Boards of Education, www.nasbe.org/heathyschools/index.htmNational School Board Association, www.nsba.org/schoolhealthBack to SchoolBack to School: Resources, http://www.starbright.org/projects/vwa/bts_resources.htmlSchool Mental HealthAmerican Academy of Child and Adolescent Psychiatry, www.aacap.orgAmerican Hospice Foundation, www.americanhospice.orgCenter for School Mental Health Assistance, csmha.umaryland.eduNational Association of Psychologists, www.naspweb.orgResearch & Training Center on Family Support and Childrens Mental Health,www.rtc.pdx.edu/index.htmSchool Mental Health Project, smhp.psych.ucla.eduChild & Adolescent Health - GeneralAcademy for Educational Development, www.aed.org/youth.htmlAmerican Academy of Pediatrics, www.aap.orgAmerican Medical Associations Adolescent Health On-Line, www.ama-assn.org/adolhlthInstitute of Medicine/National Research Council,www4.nationalacademies.org/cbsse/bocyfweb.nsfNational Adolescent Health Information Center, youth.ucsf.edu/nahicNational Center for Education in Maternal and Child Health, www.ncemch.orgNational Center for Youth with Disabilities, www.peds.umn.edu/Centers/ihd/ncyd.htmlSociety for Adolescent Medicine, www.adolescenthealth.orgUrban Institute, http://www.urban.orgChild & Adolescent Health – DataChild Trends, Inc., www.childtrends.orgDHHS-Youth Information, www.youth.os.dhhs.govFederal Interagency Council on Statistical Policy, www.fedstats.govFederal Interagency Forum on Child and Family Statistics, www.childstats.govKids Count, www.aecf.org/kidscountTrends in the Well-Being of Americas Youth & Children,aspe.os.dhhs.gov/hsp/97trends/intro-Web.htmYouth Indicators, www.nces.ed.gov/pubs/yiChildren & Adolescent Health - PolicyChildrens Defense Fund, www.childrensdefense.orgChildrens Partnership, www.childrenspartnership.orgNational Academy of State Health Policy, www.nashp.orgNational Conference of State legislators, www.ncsl.orgPublic Policy Analysis and Edu. Cntr. for Middle Childhood and Adolescent Health,youth.ucsf.edu/policycenterSouthern Institute on Children & Families, www.kidsouth.orgChildren & Adolescent Health - Family & Community Input Community Toolbox,ctb.lsi.ukans.eduFamily Support America, www.familysupportamerica.orgFamilies USA, www.familiesusa.orgHealthCareCoach.com, www.healthcarecoach.comHealth Policy – GeneralAcademy Health, www.academyhealth.orgCenter for Health Care Strategies, www.chcs.orgCenter for Health Policy Research, www.gwhealthpolicy.orgCenter for Studying Health System Change, www.hschange.comNational Committee for Quality Assurance, www.ncqa.org
  • National Health Policy Forum, www.nhpf.orgRobert Wood Johnson Foundation, www.rwjf.org