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.
We will be participating in the ECTS Congress 2023 in Liverpool. We will be moderating an ECTS-ISCBH Workshop on April 14.
“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…
We are pleased to announce that we will be participating in the ECTS Congress 2022 in Helsinki. We will sponsor an Education Symposium and the European Rare Bone Forum General Meeting will also take place during the event.
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.
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.
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:
The Rare Bone Disease Summit 2021 aims to collaborate towards improving the lives of people living with rare bone 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…
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.
