Skeletal rare diseases

There are over 300 million people living with rare diseases around the world, affecting 3.5% - 5.9% of the worldwide population. Read more
Organization of the course, held at the One Farrer Hotel in Singapore, was under the leadership of the Course Chair, Dr Manju Chandran, core faculty member of the Skeletal Rare Disorders Working Group (WG) of the IOF Committee of Scientific Advisors (CSA), and Senior Consultant and Director of the Osteoporosis and Bone Metabolism Unit, Department of Endocrinology, Singapore General Hospital. Read more
Recently, extraordinary progress has been made in our understanding of the mechanisms and molecular pathways underlying focal and sclerotic bone diseases, rare disorders which have a strong genetic component. This has already led to a clearer characterisation of these conditions and, in several cases, has enabled the development of new therapeutic approaches. Read more
A Rare Skeletal Disease course held on March 14-15 in Tel Aviv was very successful with 120 participants attending from many disciplines. Participants included endocrinologists and paediatric endocrinologists, as well as orthopaedists, radiologists, geneticists among other specialists. All benefited from an instructive, interactive two-day course which gave important insights into the diagnosis... Read more
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. Read more
Osteogenesis Imperfecta (OI) is a heritable disorder characterized by increased bone fragility. In OI Type IV muscle weakness has important functional consequences. Children and adolescents with OI type IV often have restricted mobility despite multidisciplinary treatment with bisphosphonates, intramedullary rodding surgery and rehabilitation. Read more
The new European Reference Network (ERN) for rare bone diseases (BOND), launched earlier this year, held its first meeting in Rome from May 22-24, 2017. Coordinated by Dr Luca Sangiorgi of the Istituto Ortopedico Rizzoli in Bologna, Italy, BOND will focus on all rare genetic chronic diseases that affect the skeleton. This is welcome news for people with rare skeletal diseases – who can look... Read more
Skeletal rare diseases represent a significant number of the world’s recognized rare diseases. Many of these complex conditions are severe, degenerative, and chronically debilitating. Unfortunately, due to the rare occurrence of these disorders, patients often face lack of health professional and public awareness, and must live with limited therapeutic options. Read more
Due to the rarity of genetic bone disorders, few physicians are really equipped to identify and manage adult patients who present with such disorders.  Read more
rare disease day 2016
Today, on Rare Diseases Day, the International Osteoporosis Foundation (IOF) has launched a new informational resource on rare skeletal disorders. Read more

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