News

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…

Ipsen

Canada Approves Palovarotene treatment for FOP

On Jan 24, Ipsen announced the Canada approval of Sohonos (palovarotene). Indicated to reduce new bone formation in adults and children with FOP. Sohonos is approved for both chronic use, and for flare-ups. It is the first approval for Sohonos worldwide.

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.

ERBF Call To Action Project – Kick Off Jan 2022

The European Rare Bone Forum Call To Action Project kicks off on January 2022. Visit rarebone.org for more information on this project which aims to improve access to treatments for Rare Bone Diseases and to influence policies at the national and European level. Follows us:

Rare Bone Disease Summit 2021

The Rare Bone Disease Summit 2021 aims to collaborate towards improving the lives of people living with rare bone conditions.

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.

THE IMPACT SURVEY IS LIVE – SPREAD THE WORD!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma.

ERBF Featured on RARE Revolution Magazine

We are happy to share the RARE Revolution Magazine latest issue where the European Rare Bone Forum (ERBF) is featured in an interview with one of our founders, Inês Alves.