Resources for Patients & Families

• 2nd Wind
• Angel Flight®
• CaringBridge®
• Changing Faces®
• National Association of Children’s Hospitals & Related Institutions
• Family Care America
• Fat Free Food
• Financial Assistance for Children with Special Needs
• Make-A-Wish Foundation®
• Madisons Foundation
• Patient Airlift Services
• Pfizer RxPathways
• Radiology for Patients
• Ronald McDonald House Charities®
• Southwest Airlines Medical Transportation Grant Program

Disabilities & Patients Rights

• Qualifying for Social Security Disability Benefits with a Rare Disease

Related Organizations

• A.L.E.G.
• Angiomi
• Genetic Alliance
• National Bone Health Alliance
• National Organization for Rare Disorders
• National Organization of Vascular Anomalies
• Rare Bone Disease Patient Network
• The International Society for the Study of Vascular Anomalies

Research & Treatment

• Clinical Trials.gov
• Clinical Trials Listing Service
• Lymphatic Research Foundation
• Rare Lung Disease Consortium

Scientific Journals

• American Journal of Respiratory and Critical Care Medicine
• American Journal of Roentgenology
• Annals of Thoracic Surgery
• CHEST
• Journal of Pediatrics
• Radiology
• Spine
• The Journal of Bone and Joint Surgery
• The Journal of Pediatric Surgery

Professional and Medical Societies

• American Academy of Orthopedic Surgeons
• American Society for Bone & Mineral Research
• American Thoracic Society
• United States Bone and Joint Decade
• Musculoskeletal Tumor Society
• American College of Chest Physicians
• The Cardiothoracic Surgery Network
• American Lung Association®
• Pulmonary Pathology Society
• American Pediatric Society – Society for Pediatric Research
• American Academy of Pediatrics

Government Agencies

• National Institute of Health
• National Institute of Arthritis and Musculolskeletal and Skin Disease (NIAMS)
• National Heart, Lung, and Blood Institute (NHLBI)
• National Office of Rare Diseases
• Pubmed