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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Research
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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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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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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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