IOF welcomes launch of BOND, supports research and education on Rare Bone Disorders

IOF Board member Maria Luisa Brandi MD, Professor of Endocrinology and Metabolic Diseases at the University of Florence, Italy, and Chair of the IOF Working Group on Skeletal Rare Diseases, has been elected to the European Reference Network on Rare Bone Disorders (BOND) Steering Committee.

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 forward to promising advances on the horizon.

BOND, drawing on the expertise of more than 30 European centres for metabolic bone disorders, and on the involvement of patients and patient organizations, will embark on an ambitious program of work. The goal is to achieve improved diagnostics and greater access to much needed timely advice, diagnosis and treatment. The greater visibility given to skeletal rare diseases thanks to this unique ERN will also serve to expand outreach and awareness in several ways. It is expected that BOND will create greater opportunities for common pathways in research and care, thus contributing to the programme’s success. A particularly exciting aspect is the plan for a virtual consultation system, a web-based forum which will support and help connect researchers in the management of clinically complex cases.

As the numbers of rare skeletal diseases is so large (more than 450) the field has been divided into two main categories – skeletal dysplasias and metabolic bone diseases. BOND will first prioritize two major diseases, Osteogenesis Imperfecta and Achondroplasia. Metabolic rare bone diseases are the third area of development put in the programme for the first years and with time the programme will be expanded to more diseases.

Further information about the European Network on Rare Bone Diseases (BOND)

Professor Brandi stated:

It is exciting to be involved in such a promising European Reference Network, the first to be dedicated exclusively to skeletal rare diseases. BOND opens up new opportunities and will allow us to make progress as never before on behalf of patients with rare skeletal diseases.”

IOF’s commitment to research in rare skeletal diseases is represented by its Working Group on Rare Skeletal Diseases which in 2015 launched a new taxonomy of rare genetic metabolic bone disorders according to their metabolic pathogenesis. This was followed by the launch of ‘Skeletal Rare Disorders’ , a resource hosted on the IOF website which provides detailed information on the main rare genetic disorders that affect the skeleton, outlined in four subcategories. Building on this work, in 2016 IOF held an exclusive pilot course 'Genetic disorders of bone and their adult expression' aimed to help bone specialists identify and manage rare genetic disorders of bone. Plans to hold further courses in this important field are now in progress (including an upcoming course scheduled in St Petersburg in July this year) following great interest shown by IOF’s member societies in all regions of the world.