Rare Bone Conditions

Improving care pathways for people living with rare bone diseases

Rare Bone Diseases (RBDs) represent a heterogeneous group of 771 rare conditions of genetic origin that affect the development, growth, and structure of bones and cartilage, causing short stature and abnormalities of the limbs, extremities, and spine. A recently published article called Improving care pathways for people living with rare bone diseases intends to outline the priorities for people with these conditions.

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ECTS Symposium

ERBF Sponsored Educational Symposium

“How to overcome research barriers on rare bone conditions” will be the main topic of our Sponsored Educational Symposium at the ECTS Congress 2022 — 8th May | 13.30 | Auditorium 101. The whole research process entails various steps and demands collaboration. Researchers, clinicians and patients often encounter multi-level barriers in the development and/or execution

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Study on Patients’ priorities and expectations

Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions

A recently published study entitled Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions(1), with the participation of Inês Alves from ANDO Portugal (Patient Group Representative of the European Rare Bone Forum), highlights the importance of understanding the natural history of rare bone and mineral conditions to improve clinical practice

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