European rare
bone forum
A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in Rare Bone conditions
NEWS
ECTS-ISCBH Collab Workshop with ERBF
On the 14 April we will be moderating a workshop at the ECTS 2023 Congress in Liverpool. Starts at 2 pm (GMT+1). Take a look at the programme.
Survey on current unmet needs in RBC
As part of the Call to Action project, we are conducting a survey on unmet needs in RBC, challenges in research, and solutions to overcome these barriers. Take part by Feb 6.
Our 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.
ERBF 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
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
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
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...
