The IOF SRD Academy was launched in August 2020 with the mission to advance and disseminate much needed knowledge, and communicate the importance of diagnosis, management and support for rare bone diseases. Areas of activity will include scientific publications, development of educational programmes and training courses, and dissemination of informational resources for patients and healthcare professionals.
In addition, the Academy has presented the first IOF Skeletal Rare Diseases Awards which recognize research excellence among young scientists in the field.
The IOF SRD Academy is led by Co-Chairs Professor Nicholas Harvey (Chair of the IOF Committee of Scientific Advisors) and Professor Maria Luisa Brandi (SRD Academy Convener) and includes the following expert members: Dr Manju Chandran (Singapore), Prof. Roland Chapurlat (France), Prof. Serge Ferrari (Switzerland) and Prof. Kassim Javaid (UK).
The SRD Academy reflects 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 IOF Skeletal Rare Disease Working Group. This includes the publication of the ‘Taxonomy of rare genetic metabolic bone disorders’ with a related online atlas that describes more than 90 rare genetic metabolic bone disorders according to their metabolic pathogenesis, and a fact-sheet on X-Linked Hypophosphatemia (XLH) . As well, educational webinars and a series of successful training courses were held.
With this new initiative, IOF will work to raise awareness and increase knowledge of these disabling, yet neglected ‘orphan’ disorders primarily among healthcare professionals, and among the general public as well.
The IOF SRD Academy is financially supported by Kyowa Kirin, which has no input into the Academy Committee, abstract selection or awards