A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in Rare Bone conditions
This recently published article intends to outline the priorities to overcome the challenges and improve the lives of people living with RBDs.
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.
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.
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.
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.
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...
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...