The European Rare Bone Forum (ERBF) is proud to announce the publication of its latest white paper: “Research and Development of Treatments for Rare Bone Conditions in Europe”, developed in collaboration with Costello Medical. This landmark document outlines key challenges and opportunities in advancing therapies for rare bone conditions (RBCs), and calls for stronger cross-sector collaboration, policy support, and investment in R&D.
The white paper was officially launched during the Joint Congress of the European Society of Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) on 11 May 2025. Representing the ERBF and ANDO Portugal, Inês Alves presented the white paper and emphasized the need for a coordinated European strategy to improve diagnosis, treatment access, and innovation in this underrepresented field.
This white paper is the result of a multi-stakeholder collaboration, bringing together patients, clinicians, researchers, and industry representatives. It highlights the barriers to effective treatment development—such as data fragmentation, limited patient registries, and a lack of targeted funding—and proposes concrete recommendations to drive progress.
Read the full white paper here: Research and Development of Treatments for Rare Bone Conditions in Europe
Stay tuned to learn more and to be updated on our work on Rare Bone Conditions.
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