The research, conducted by the Education and Training Working Group of the European Reference Network for rare bone diseases, known as ERN BOND, together with colleagues from the European Reference Network on rare endocrine conditions, Endo-ERN, set out to map the entire education and training landscape for rare bone and mineral disorders, or RBMDs, across Europe. ERN BOND is one of 24 European Reference Networks approved by the European Commission in 2017, created to achieve cross-border excellence in care by connecting accredited expertise centers. The network initially brought together 38 fully accredited centers from 10 member states, including the United Kingdom until its withdrawal from the EU in January 2020, and now reaches 49 health care providers in 19 member states. Endo-ERN, with its own thematic group dedicated to rare calcium and phosphate disorders that directly affect bone mineralization, represents the complementary endocrine expertise needed to care for these patients.

To capture the true scope of existing educational activity, the team designed a comprehensive 56-question online survey combining open-ended, multiple-choice, and closed-ended questions. The instrument was organized into four sections covering the background and educational activities of respondents, the scope of undergraduate and postgraduate teaching in RBMDs, the assessment of educational competence, and future plans for education in the field. Dissemination took place over two months, from September to November 2019, through the SurveyMonkey platform, with an external specialized agency, Weber Shandwick, handling data collection and preliminary analysis in close consultation with the working group. To avoid duplication, only one response per health care provider was accepted, and data from the two networks were analyzed separately.

The response was striking. Of the 38 ERN BOND health care providers invited, 31 participated, an 82 percent response rate, while 38 of the 78 Endo-ERN providers took part, a 49 percent rate. Collectively, 69 individual, non-duplicate respondents from 20 of the 28 European member states participating at the time provided a detailed account of how they learn, teach, and maintain competence in this rarefied field. The respondents were overwhelmingly experienced: most ERN BOND participants were over 50 years of age, and 84 percent had more than 20 years of clinical practice, compared with 55 percent of Endo-ERN respondents. More than two-thirds of ERN BOND respondents and 89 percent of Endo-ERN respondents worked in academic hospital settings or mixed academic and non-academic institutions, and none worked in private practice. ERN BOND respondents were primarily pediatric endocrinologists, followed by clinical geneticists and adult endocrinologists, with orthopedic surgeons, rheumatologists, and radiologists also represented.

When it came to seeking information about rare bone and mineral disorders, both networks relied heavily on PubMed Central, used by 90 percent of ERN BOND and 100 percent of Endo-ERN respondents. The second most popular tool was remarkably low-tech: emailing or phoning a colleague with specific disease expertise, a practice reported by 81 percent of ERN BOND and 58 percent of Endo-ERN respondents. This finding highlights the enduring importance of short lines of communication within the rare bone community, regardless of national borders. Disease classification tools such as OMIM and Orphanet were also widely used, particularly by ERN BOND respondents, and every ERN BOND respondent reported membership in at least one national, European, or international scientific society, including bone-focused organizations such as the European Calcified Tissue Society, the American Society for Bone and Mineral Research, and the International Osteoporosis Foundation.

The survey also quantified how these experts learn on a weekly basis. Among ERN BOND respondents, 84 percent reported spending more than two hours per week on learning and 74 percent on teaching about RBMDs, with similar figures among Endo-ERN participants. Educational activities most commonly involved online literature searches, attendance of Meet the Expert sessions, and RBMD-related courses. Yet the survey exposed notable disparities between the networks: 79 percent of Endo-ERN respondents had never attended a webinar in the previous three years, compared with 35 percent of ERN BOND respondents; 55 percent had never completed continuing medical education in the field, compared with 23 percent; and half had never taken a course on RBMDs, compared with 13 percent.

Undergraduate teaching offered a somewhat brighter picture. Two-thirds of respondents from both networks reported that RBMDs were included in the medical school curriculum, with teaching spread across the six-year program, though most hours were concentrated toward the end. Formal, teacher-driven lectures dominated, used by two-thirds of institutions, while interactive seminars, small-group tutorials, and case-based teaching played smaller roles. Online tools such as e-learning modules, video lectures, and webinars were used by only 32 percent of institutions. At the postgraduate level, education in RBMDs was concentrated in endocrinology, pediatrics, and genetics, with formal lectures and learning on the job cited as the most frequent tools by both networks. When asked what measures would best address training needs, 55 percent of ERN BOND and 77 percent of Endo-ERN respondents pointed to training workshops and seminars, while remarkably few endorsed webinars or e-learning as sufficient on their own.

Perhaps the most sobering findings concerned clinical guidelines and competence assessment. Seventeen percent of ERN BOND respondents reported having no available guidelines at all for RBMDs, and among Endo-ERN respondents that figure rose to 48 percent. Online access to guidelines through center websites was poor for both networks, with less than a quarter of respondents indicating such availability. Competence assessment was compulsory for 55 percent of ERN BOND and 43 percent of Endo-ERN respondents, but its components varied widely, from numbers of patients seen to continuing education credits to specialized procedures such as bone biopsy. When asked to identify the major gaps in knowledge and competence, both networks converged on the same answer: specialist training and specialist education, followed by gaps in the education of other health care professionals involved in the management of these patients.

The appetite for change was nearly universal. All but a handful of respondents from both networks supported the creation of a common educational platform to develop a cross-border educational program in rare bone and mineral disorders. Respondents identified the European Commission, through ERN BOND or special calls for educational initiatives, as the most appropriate funding source, and estimated the potential candidate pool for a specialized program at up to 20 individuals per country across all relevant specialties and stakeholders. The survey data have already informed concrete action: since May 2021, ERN BOND has delivered 36 freely accessible webinars with over 650 live participants, including a series co-organized with the European Calcified Tissue Society and others delivered with the ERICA project and the European Joint Programme on Rare Diseases. The network has also intensified use of its Clinical Patient Management System, a secure web-based platform that allows clinicians to collaborate across borders on rare and complex cases through virtual consultations, effectively bringing experts to the patient rather than patients to the experts.

The authors conclude that the findings underscore an unfulfilled need for accredited Clinical Practice Guidelines for RBMDs, for structured competence assessment in the field, and above all for an education and training program with a uniform structure for developing teaching material, common formats and platforms, and secure funding. The willingness of experts from both networks to support shared educational projects, they argue, is a promising foundation for the next phase: a comprehensive, harmonized, and accessible cross-border program that includes training exchange fellowships and focused workshops, ensuring that expertise in these rare disorders is not lost with a retiring generation but passed on, systematically, to the clinicians who will care for these patients next.

Subject of Research: Education and training gaps for rare bone and mineral disorders among European Reference Network providers

Article Title: Baseline survey on the scope of education and training for rare bone and mineral diseases

Article References: Hamdy, N. A. T., Iotova, V., Casareto, L., Gallerani, E., Pereira, A., Sangiorgi, L., & for the ERN BOND Education & Training Working Group (2026). Baseline survey on the scope of education and training for rare bone and mineral diseases. Archives of Osteoporosis, 21(1), Article 140. https://doi.org/10.1007/s11657-026-01773-y

Image Credits: AI Generated

DOI: 10.1007/s11657-026-01773-y

Keywords: rare bone and mineral disorders, ERN BOND, Endo-ERN, European Reference Networks, medical education, health care professionals, clinical guidelines, competence assessment, cross-border health care, rare diseases, training workshops, continuing medical education