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)