Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily.
Services for Health Care Professionals
- Questions and Answers. Information is available from the staff of the OI Foundation National Information Center. Consultations with members of the Foundation’s Medical Advisory Council can also be arranged. Contact the OI Foundation by telephone at 800-981-2663 or by email at Bonelink@oif.org
- OI Foundation Clinic Directory is a list of hospitals offering programs of interdisciplinary care for children and adults who have OI. This list is updated annually.
- OI Foundation Physician List is maintained by the OI Foundation. It is a list of health care providers who have identified themselves as knowledgeable about OI and who have expressed an interest in treating patients who have OI. To be included on this list, contact the OI Foundation.
Summary of Basic Information For a summary of basic information about OI, the types of OI and common myths see the About Osteogenesis Imperfecta section of this web site.
Three fact sheets have been written for hospital staff caring for an infant with OI for the first time. Neonatal and Nursery Care Handling Suggestions Quick Tips for Nurses
Research Information Information about on-going studies, research updates, and the OI Registry is available in the Research & Studies section of the web site.
Apply for Grants for Medical Researchers Information about Michael Geisman Research Fellowships, Seed Grants and Clinical Seed Grants, the OI Foundation Grant process is provided in this section.
Publications for Health Care Professionals The following publications have been prepared by the OI Foundation and health care providers who are experienced in the care of people who have OI.
NEW! Guide to Osteogenesis Imperfecta for Pediatricians and Family Practice Physicians. This 30 page booklet was written as an introduction to medical management of OI for doctors who are meeting their first OI patient or who care for only a few people who have OI. Designed for easy reference it covers basic information about OI and its diagnosis, medical management, treatments, clinical issues, general health care issues, and infant care. A discussion on providing social and emotional support and a resource section are also included. The booklet was prepared as a joint project between the OI Foundation and the National Institutes of Health Osteoporosis and Related Bone Diseases National Resource Center. Dr. Francis Glorieux, Director of the OI Program at the Shriners Hospital for Children in Montreal Canada, served as the editor. Families and other health care providers may also find it useful. The Guide to OI is available in print, and as a PDF.
Osteogenesis Imperfecta: An Introduction for Medical Professionals, Individuals, & Families. This 12-page introduction is available through the Online Store or as a PDF
OI: A Guide for Nurses This 64 page book covers basic information about OI and includes specific information about nursing care needs of children and adults who have OI. It is available through the Online Store.
Therapeutic Strategies for OI: A Guide for Occupational and Physical Therapists. This 14-page booklet is available through the Online Store or as a PDF
Children with OI: Strategies to Enhance Performance. This 252-page book is a comprehensive guide to the physical activity needs of children with OI from infancy through the teen years. It is available through the Online Store.
Interdisciplinary Treatment Approach for Children with Osteogenesis Imperfecta Written by members of the OI treatment team at the Shriners Hospital for Children, Montreal, Canada, it offers information on diagnosis, medical, surgical, nursing and rehabilitative care for children who have OI from infancy through the teen years. It includes an explanation of the protocol developed by this team for using the drug pamidronate as a treatment for OI. It is available in English, French and Spanish. Copies must be ordered directly from the Montreal Hospital. Order forms are available.
Additional Publications The OI Foundation has developed a series of fact sheets on a wide range of topics related to understanding and managing osteogenesis imperfecta. A complete list of fact sheets, books and brochures is posted in the Information Center.
Medical Advisory Council OI Foundation Medical Advisory Council (MAC) members are listed along with their institutions.
|