Rare Bone Conditions

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…

PROM Survey

Take the EuRR-Bone PROMs survey

If you have rare bone or endocrine condition, or are a physician who follows people with these conditions, give your opinion on what are the most important questions to ask about daily experiences and health needs.

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…