European rare
bone forum

A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in Rare Bone conditions

NEWS

ERBF Sponsored Educational Symposium

ERBF Sponsored Educational Symposium

"How to overcome research barriers on rare bone conditions". This will be the main topic on our sponsored Educational Symposium at the ECTS Congress 2022.

European Rare Bone Forum at the ECTS Congress 2022

European Rare Bone Forum at the ECTS Congress 2022

An European Rare Bone Forum sponsored Education Symposium, as well as the ERBF General Meeting, will take place at the ECTS Congress 2022 in Helsinki, on Sunday 8th May at 13.30.

Canada Approves Palovarotene treatment for FOP

Canada Approves Palovarotene treatment for FOP

On January 24, Ipsen announced the approval of Sohonos (palovarotene capsules) in Canada for treatment of FOP. It is the first approval for Sohonos worldwide.

Study on patients’ priorities and expectations

Study on patients’ priorities and expectations

A recently published study with participation of Inês Alves from ANDO Portugal (Patient Group Representative of the ERBF), highlights the importance of natural history of RBMCs...

Rare Bone Disease highlights at ASBMR 2021

Rare Bone Disease highlights at ASBMR 2021

Listen to the podcasts and access educational resources covering the key rare bone disease highlights from the American Society for Bone and Mineral Research 2021...

"Call to action" project

Inês Alves, on behalf of the ERBF, requested a proposal from Costello Medical to assist in a ‘call to action’ to shorten the time between research and clinical care in Rare Bone Diseases...

ABOUT US

Rare Bone Conditions in numbers

1 +
SKELETAL DYSPLASIAS​
1 +
metabolic bone diseases
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people affected