A new International Osteoporosis Foundation (IOF) initiative has been launched to support communication, educational programmes, and research advances in rare disorders of the bone.
The IOF has launched the new initiative to promote awareness, provide education and training, and support research advances related to skeletal rare diseases, as genetic disorders specifically involving the skeletal system represent a significant portion of the known rare diseases. Currently, more than 430 genetic disorders of the skeleton have been identified so far.
Skeletal Rare Diseases Academy
The mission of the academy is to advance knowledge in the field and communicate the importance of diagnosis, management, and support for rare diseases. The academy will undertake scientific publications, development of educational programmes and training courses, and dissemination of informational resources for patients and healthcare professionals.
Professor Nicholas Harvey, Chair of the IOF Committee of Scientific Advisors and Co-Chair of the new initiative, commented: “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 recognise, disorders.
“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.”
The launch of the SRD Academy underlines IOF’s longstanding commitment to advancing knowledge of skeletal rare diseases, and builds upon the extensive body of past work carried out by the former.
Professor Maria-Luisa Brandi, Co-Chair of the IOF SRD Academy added: “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. 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 of people are affected worldwide.”
