Research

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…

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…

ERBF Call to Action

The CALL TO ACTION project

The European Rare Bone Forum, requested a proposal from Costello Medical to assist in a call to action to shorten the time between research and clinical care.

Rare Conversations #3 – Research in Rare Disease

The third episode of Alexion’s Rare Conversations event series, in cooperation with BPI, will be a forum to discuss specificities and needs of research in rare diseases. Indeed, research and development of new treatments in rare and ultra-rare diseases faces its own challenges, due to missing knowledge of the disease, small patient population, difficulties to…