International course 'Genetic disorders of bone and their adult expression' held in St. Petersburg

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One-Day course organized by the Russian Association on Osteoporosis with the support of IOF provided participants with a better understanding of rare bone disorders.

On July 7, 2017 an international course ‘Genetic Disorders of Bone and their Adult Expression’ was held in St Petersburg, Russian Federation. The course was organized by the Russian Association on Osteoporosis, with the support of the International Osteoporosis Foundation (IOF). The St. Petersburgh course follows the successful pilot course held in November 2016 in Geneva, Switzerland, which was much anticipated and well received by healthcare professionals and researchers with an interest in rare skeletal diseases.

IOF thanks the excellent speakers as well as Prof. Olga Lesnyak, President of the Russian Association on Osteoporosis, for their commitment and participation.   

Speakers included:
- Maria Luisa Brandi – MD, PhD, Full Professor of Endocrinology at the University of Florence (Italy); Chair of the IOF Working Group on Skeletal Rare Diseases;
- Muhammad Kassim Javaid – MD, Associate Professor in Metabolic Bone Diseases at the University of Oxford (UK);
- Neveen Agnes Therese Hamdy – MD, Rheumatologist, Leiden University Medical Center (Netherlands).

The following topics in the field of genetic diseases in adults were covered:

  • genetic studies and their use in clinical practice;
  • diagnostics and clinical aspects of bone fragility;
  • differential diagnostics of secondary osteoporosis;
  • focus on chronic bone pain: is a genetic cause possible?
  • focus on avascular necrosis as a leading symptom;
  • focus on re-fractures as a leading symptom;
  • focus on mineral metabolism and its pathology;
  • treatment of genetic diseases of the skeleton.

Approximately 50 physicians of various positions and specialties (rheumatologists, radiologists, endocrinologists, neurologists, therapists, gynecologists and family doctors) came to St. Petersburg from different regions of Russia and even neighboring countries. The audience showed a deep interest in the topics discussed – asking many questions and sharing their own experiences. At the end of the Course all participants were issued with certificates of attendance. All course participants found that the course contributed greatly to their knowledge about genetic disorders of bone, with 91% stating that they were ‘extremely satisfied’.

IOF is committed to progress in research and education in skeletal rare diseases, an area of medicine which has suffered from neglect, much to the detriment of patients who live with these rare diseases. In February 2016, on Rare Diseases Day, the Foundation launched a new web-based resource on skeletal rare disorders, a source of detailed information on the main rare diseases that affect the skeleton, outlined in four subcategories. There have been more than 42,500 page views since its launch, testifying to the need for information in the field among healthcare professionals and researchers worldwide. 

Professor Maria Luisa Brandi stated:

As shown by global interest in the course, and our participant feedback, there is a thirst for knowledge about skeletal rare diseases. IOF is hoping to replicate the course in a similar format in other locations, as well as to intensify further our efforts to spread knowledge and build collaborations within the field.”