GOVERNMENT RESOURCES National Institute of Health(NIH) National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS) National Heart, Lung and Blood Institute (NHLBI) Office of Rare Diseases National Library of Medicine Medline Plus Social Security Administration
VOLUNTARY HEALTH ORGANIZATIONS American Heart Association (AHA) Genetic Alliance (GA) Research! America National Health Council (NHC) National Organization for Rare Disorders (NORD) Stickler Involved People (SIP) The Scoliosis Foundation VOLUNTARY HEALTH ORGANIZATIONS SPECIFIC TO CONNECTIVE TISSUE DISORDERS International Federation of Marfan Syndrome Organizations (IFMSO) Coalition of Heritable Disorders of Connective Tissue(CHDCT) Ehlers-Danlos National Foundation Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation Loeys-Dietz Syndrome Foundation SUPPORT RESOURCES National Council on Independent Living Exceptional Parent: A magazine for parents of children with disabilities Disability Resources, Inc. Ask Me 3 – Good Questions for Your Health OTHER
Thoracic Aortic Disease (TAD) Coalition
Positive Exposure GeneTests Tall Clubs International DNA Learning Center (particularly recommended for students) Booklet for Children National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC)
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