WG8 Education and Training




Leiden University Medical Center, center for bone quality, Leiden





Royal Manchester Children’s Hospital, Manchester, UK




To encourage and facilitate the development of training and continuous education programmes.

  • To increase awareness and knowledge about Rare Bone Diseases among all stakeholders in the care of these diseases, including patients and patients organisations in order to prevent unacceptable diagnostic delays and associated burden of potentially disabling complications, and to ensure the use of best clinical standards of care across Europe.

  • To enhance educational quality and competencies of all stakeholders in the care of patients with Rare Bone Diseases by the identification of needs, of available educational platforms, by the optimal use of existing resources, and by the pursuit of new ones for the use of all stake holders in the area of expertise of BOND-ERN including patients and patients’ organisations.

  • To increase the scale and scientific quality of Education & Training by developing a cross-border accredited very focussed, high quality Educational Programme in Rare Bone Diseases, encompassing evolving knowledge, scientific developments as well as new emerging technologies in the field of communication, in order to bring this very specialized field of knowledge to all stake holders in the management of these disorders.

  • To secure a continuum of Education by continually updating and transmitting state-of-the-art knowledge, including as a priority best clinical practices.

  • To support the shift from Conventional Teaching to Learning by using a user-oriented approach in the development of Educational Programmes for all stakeholders involved in the care of patients with Rare Bone Diseases, including programmes developed with patients for patients.

  • To maximise and spread the benefits of Education and Training across member states.

  • To harmonize the quality of Education and Training in Rare Bone Diseases first among BOND-ERN participating member states and eventually beyond.

  • Valorisation of the Educational programme by developing norms for recognition of competencies in the field. This would also facilitate recognition of new expertise centres by National Bodies, thus increasing the possibility in increasing the number of participating centres of excellence from new countries

  • To build partnerships between institutions by creating clinical exchange programmes.



  • To identify potential sources of funding for the development of a fully comprehensive Education and Training Programme for Rare Bone Diseases
  • To identify key partners to WG8 for the development of an overreaching educational programme

All BOND work groups, top world experts, patient representatives & PAGs, scientific societies, pharmaceutical industries, technical/IT experts, experts in data management and stewardship, in bio banking and all other experts involved in the management of patients with rare bone disorders

  • To explore available educational platforms/infrastructure among BOND partners and costs of developing online educational programmes: e-learning modules, webinars, CMEs, video lectures, etc…


For example, the University of Leiden Innovation Centre “e-learning Lab” with capacity to develop

  • Massive Open Online Courses (MOOCs), with possibility of producing YouTube videos
  • Small private online courses (SPOCs)