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  1. 1. 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 Needs of Genetic Support Groups, http://www.geneticalliance.orgAmerican Academy of Pediatrics, Healthcare Foundation, kidney disease issues, americanhealthcarefoundation.orgAmerican Society for Clinical Nutrition, American Society for ClinicalNutrition,American Society for Parenteral & Enteral Nutrition, www.clinnutr.orgAntiphospholipid Antibody Syndrome, 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), Manual, Society for Parenteral & Enteral Nutrition,* 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, of Intravenous Therapy Education, www.lite.orgNational Board of Nutrition Support Certification, www.nutritioncertify.orgNational Home Infusion Association, www.nhianet.orgAmerican College of Gastroenterology, 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, Lipid Association, Osteoporosis & Related Diseases, ResourcesThe Stanford Health Library
  2. 2. Childrens and Womens Health Center, ResourcesAmerican Gastroenterology Association,www.gastro.orgAmerican Liver Foundation, for Disease Control, www.cdc.govChrons and Colitis Foundation of America,,, B Coalition, on Clincial Trials and Human Research Studies, Foundation for Functional Gastrointestinal Disorders, Medicine (a holistic website), Am. Society for Pediatric Gastroenterology Hepatology and Nutrition,, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, Gastro-Intestinal Research Foundation of Chicago, Hormone Society, (excellent basic info)Gastroparesis and Dysmotilities Association, 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, Board of Genetic Counciling, Board of Medical Genetics, College of Medical Genetics, www.acmg.netAmerican Diabetes Association, Society of Human Genetics, Endocrine Web, Society, Nurses Society, www.endo-nurses.orgGrowth Genetics and Hormones, medical journal, Diabetes Research Foundation, Wilkins Pediatric Endocrine Society, Society of Genetic Counselors, Endocrine Nurse Society, Academic Societies (PAS), www.pas-meeting.orgPituitary, basic information, Ovarian Syndrome Association, text- medical articles online, great source!,, www.geneclinics.orgHuman Gene Mutation Database, Genome Project Reference Sequence, Center for Biotechnology Information (NCBI), Air Transport
  3. 3. Angel Flight flight or for region specific assistance: Mental HealthUnmet Needs of Children With Chronic Health Conditions, 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, Eggs or Something!?" Cracking Hospital Life, am I Chopped Liver?: How to stay actively involved with your doctor., 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, 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,, 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 Transportation Security Administrationocial(Information for travellers with disabilities and medical conditions) Advocate Center- (help with many issues)Clinical Trials ResourcesClinical Trials searchable databaseClinical Trials, by the National Institutes of Health, Disease / Condition Specific Organizations and Family pages22q11 deletion syndrome, Syndrome, Cancer Society, www.cancer.orgAmerican Liver Foundation, www.liverfoundation.orgAmerican Pseduo-Obstruction & Hirschsprungs Disease Society, Society of Clinical Oncology, www.asco.orgAngelman Syndrome, or
  4. 4. 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., Palsy Parent Home Page, www.cpparent.orgCharge Syndrome, Deletion Outreach, www.chromodisorder.orgChromosome Disorder Support Group (rare): www.rarechromo.orgConnexin-deafness, de Lange Syndrome, Syndrome, and Colitis Foundation of America, www.ccfa.orgCyclic Vomiting Syndrome Association, www.cvsaonline.orgDysautonomia Foundation, Inc., www.familialdysautonomia.orgDiGeorge Syndrome, 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,, International Foundation for Functional GI Disorders, www.iffgd.orgIrritable Bowel Disease Page, Pseudo-Obstruction, 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.prader-willi.orgSmith-Magenis Syndrome, www.smithmagenis.orgSotos Syndrome, Syndrome/Infantile Spasms, Syndrome, www.wsf.orgList of Rare Diseases, Disease Centered Organization for Rare Disorders (NORD),, of Rare Disorders, Acidemia Association, www.oaanews.orgOrthopedics of all kinds- listing site, Foundation,
  5. 5. 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, Syndrome, www.rsrf.orgSAFE, Inc. (supporting Autism & Families), www.autismsafe.orgThe Guardian Society (motility disorders), www.guardiansociety.comThe National Adrenal Diseases Foundation, National Eosinophilic Enteritis Disease Foundation, Vater Connection, www.vaterconnection.orgThyroid List, Womens and Childrens Center, Living, www.transplantliving.orgUnited Mitochondrial Disease Foundation, www.umdf.orgUnited Network for Organ Sharing, www.unos.orgUnited Ostomy, www.uoa.orgWilliams Syndrome, for ParentsBandaides and Blackboards, Ranch (Resort for chronically ill youth late teens, early 20s)www.dreamsteetfoundation.orgChildrens Medical Organizer, 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, Information Center for Children and Youth, www.nichcy.orgNew Visions (workshops on oral feeding skills), Educational Advocacy Training Center, www.peatc.orgSNAP Online, www.snapinfo.orgSupport for Adult Sibling/Child Siblings of People with Special Needs, Painted Turtle (offers summer camp experience for kids with IBD) Medicine, 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, Online (charges fees for some services) for Caregivers to Help A Caregiver Network, from a Distance (for long distance caregivers), www.cfad.orgWell Spouse Foundation, Health CentersNational Assembly on School-Based Health Care, www.nasbhc.orgBureau of Primary Health Cares Healthy Schools, Healthy Communities, Association of Community Health Centers,
  6. 6. School Health - GeneralAmerican School Health Association, www.ashaweb.orgCenters for Disease Control, Association of School Nurses, www.nasn.orgNational Association of State Boards of Education, School Board Association, to SchoolBack to School: Resources, 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, Mental Health Project, smhp.psych.ucla.eduChild & Adolescent Health - GeneralAcademy for Educational Development, Academy of Pediatrics, www.aap.orgAmerican Medical Associations Adolescent Health On-Line, of Medicine/National Research Council, Adolescent Health Information Center, Center for Education in Maternal and Child Health, www.ncemch.orgNational Center for Youth with Disabilities, 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, in the Well-Being of Americas Youth & Children, Indicators, & 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, 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.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,
  7. 7. National Health Policy Forum, www.nhpf.orgRobert Wood Johnson Foundation,