ERN BOND: The key European network leveraging diagnosis, research, and treatment for rare bone conditions

• DOI: 10.1016/j.ejmg.2024.104916
• Publication Date: 2024-02-01T16:58:53Z
• Authors: Lorena Casareto; Natasha M. Appelm...; Maria Luisa Brandi; Roland Chapurlat; Valérie Cormier-D...; Neveen A.T. Hamdy; Karen E. Heath; Joachim Horn; Giovanna Mantovani; Klaus Mohnike; Sérgio Bernardo S...; André Travessa; Lena Lande Wekre; M. Carola Zillikens; Luca Sangiorgi
• Keywords: Realisation; Scope (computer science)

There is no universally accepted definition for rare diseases: in Europe a disease considered to be when affecting fewer than 1 2000 people. European Reference Networks (ERNs) have been the concrete response address unmet needs of patients and many pan-European issues field, reducing inequities, significantly increasing accessibility high-quality healthcare across Europe. ERNs are virtual networks, involving centres patient representatives with general scope facilitate discussion on complex cases requiring highly specialised competences trained expertise. ERN BOND - Network Rare BONe Diseases one these 24 approved networks specific ongoing mission implement measures facilitating multidisciplinary, holistic, continuous, patient-centred, participative care provision patients, supporting them full realisation their fundamental human rights. includes total 53 expertise from 20 countries. Its governing structure installed March 2017 decision-making, operative consultative committees, which comprise experts field ensuring patient's voice perspectives taken into account. Over years, has worked hard achieve its valuably contribute advancement diagnosis, management, treatment, research diseases. The network activities mainly related (i) collectively involves averagely 2800 diagnosed per year, (ii) development education training personnel consisting until now 7 thematic workshops 19 webinars, (iii) dissemination exchange spread knowledge via network's website (https://ernbond.eu/), social media channels, newsletters, (iv) management data through registry currently mapping over 2300 recording 600 reported cases, (v) enhancement include two clinical trials endorsed by network. represents therefore an unprecedented move improve suffering bone diseases collaborations. This network, support Health Programme, will continue pursue efforts goals, always maintaining families at centre services.