Called the IOF Skeletal Rare Diseases Academy, the initiative was announced ahead of this year’s World Congress on Osteoporosis, Osteoarthritis and Musculoskeletal Diseases.
Funded by Japan-based Kyowa Kirin, the academy will support research advances into the more than 430 genetic disorders that have been identified as involving the skeletal system, and promote education and training of scientists and clinicians. In addition to XLH — characterized by soft, weak bones — skeletal diseases include osteogenesis imperfecta, Gaucher disease, fibrous dysplasia, and hypophosphatasia.
“One of IOF’s key missions is to promote awareness and understanding of rare bone disorders, so that healthcare professionals who are not specialists in these conditions are better able to identify and treat people suffering from these, often difficult to treat, disorders,” Nicholas Harvey, MD, PhD, said in a press release. Harvey is chair of the IOF committee of scientific advisors and co-chair of the Academy.
“With increased education and training, healthcare professionals and their patients will be able to benefit from the rapid and exciting progress being made in the field. This includes new diagnostic strategies and promising targeted therapies that can vastly improve the lives of patients around the world,” added Harvey, who also is a professor of rheumatology and clinical epidemiology at the University of Southampton, U.K.
To advance knowledge of bone disorders, and communicate the importance of disease diagnosis and management, academy efforts will involve scientific publications, development of educational and training programs, and spreading information for patients and healthcare professionals. To promote research excellence among young scientists in the field, the academy also will present awards.
In addition to Harvey, Maria-Luisa Brandi, MD, PhD, also is a co-chair of the Academy and an IOF board member.
“With this new initiative, IOF will work to raise awareness and increase knowledge of these disabling yet neglected orphan disorders primarily among healthcare professionals, but also among the general public,” said Brandi. “It is always worthwhile remembering that, although these diseases are rare and therefore suffer from lack of attention, there are many such disorders, so millions are affected worldwide.”
The launch of the IOF Skeletal Rare Diseases Academy builds upon efforts by the former IOF Skeletal Rare Diseases Working Group, which produced “Taxonomy of Rare Genetic Metabolic Bone Disorders” and an XLH fact sheet. The group also held educational webinars and a series of training courses globally.
The IOF is the world’s largest nongovernmental organization focused on the prevention, diagnosis, and treatment of osteoporosis and associated musculoskeletal disorders.
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