ERBF at the ASBMR 2025 Annual Meeting in Seattle
ERBF at the ASBMR 2025 Annual Meeting in Seattle to present a poster on Research and Development of Treatments for Rare Bone Conditions.
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White Paper Published: Mapping the Future of R&D for Rare Bone Conditions in Europe
White Paper Published: Mapping the Future of R&D for Rare Bone Conditions in Europe. Research & Development of Treatments for Rare Bone Conditions in Europe, developed in collaboration with Costello Medical.
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ERBF to Present White Paper at ESPE-ESE Joint Congress 2025
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.
ERBF to Present White Paper at ESPE-ESE Joint Congress 2025 Read More »
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-ISCBH workshop in conjunction with the European Rare Bone Forum
We will be participating in the ECTS Congress 2023 in Liverpool. We will be moderating an ECTS-ISCBH Workshop on April 14.
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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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ERBF Education Symposium and General Meeting at ECTS 2022
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.
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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.
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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.
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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:
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