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Related Organizations
American Academy of Orthopaedic Surgeons
American Academy of Pediatrics
American Society for Bone and Mineral Research
Genetic Alliance
National Coalition for Osteoporosis and Related Bone Disease:
National Action Plan for Bone Health
National Human Genome Research Institute
National Health Council
National Osteoporosis Foundation
National Institutes of Health
The NIH Osteoporosis and Related Bone Diseases~National Resource Center
The OI Federation of Europe (OIFE)
Shriners Hospital for Children Directory
OI Programs
The OI Registry
OI Program at the NIH Dr. Joan Marini, Director
OI Clinic at the Kennedy Krieger Institute Dr. Jay Shapiro, Director
OI Program at the Shriners Hospital for Children in Montreal, Canada Dr. Francis Glorieux, Director
Services and Resources
The American Red Cross under “Services” find information on preparing for emergencies for families and people who have disabilities.
Children and Clinical Studies presents information about why research in children is important, how studies are conducted and steps to take to protect the child’s health and privacy. A 10-minute, award winning video is featured.
Clinical Trials, a comprehensive listing of clinical trials including information about study results and background information about how to safely participate in research.
Disabilityinfo.gov is a comprehensive listing of disability-related information and resources and can connect you to national programs as well as programs in each state.
The Family Center on Technology and Disability has assistive technology information.
Family Voices lists programs in each state for families raising a child with a chronic health condition; materials for working with schools and other family focused information.
Government Benefits assists individuals find and apply for a wide range of government programs.
The Hearing Loss Association of America has information on coping with hearing loss, effective communication, hearing aids and cochlear implants.
The National Foundation of Dentistry for the Handicapped has information on sources of free or reduce price dental care for families.
National Highway Traffic Safety Administration (NHTSA) information on child safety seats and air bag on/off switches.
National Mobility Equipment Dealer’s Association (NMEDA) provides information
about wheelchair accessible vehicles and equipment for adapting a car, van or
truck for use by a person who has a physical disability. Contact information
for member dealers is provided.
The National Park Service describes programs and services for people with disabilities including reduced service fees inmost national parks.
National Patient Travel Center is a non-profit organization that links people with free or greatly discounted airfare for ravel related to medical care.
Parent Training and Information Centers has information on working effectively with school systems.
PhRMA, The Pharmaceutical Research and Manufacturers of America lists information a free and reduced price prescription programs.
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