Rare Bone Disease

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.

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.

QoL Studies in Rare Bone Diseases: why, who & how?

Please join us on Thursday October 29, 2020 15h CET. Julia Quitmann (University Medical Center, Hamburg – Eppendorf) will be our Speaker addressing Quality of Life Studies in Rare Bone Diseases: why, who and how? This Webinar has the support of the European Calcified Tissue Society (ECTS).