Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…
Ingunn Westerheim and Ida Männistö have been re-elected respectively as President and 2nd Vice President of OIFE for the next 4 years.
Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future. Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well…
The European Medicines Agency and EU healthcare payers continued their cooperation this week at a meeting in Diemen, the Netherlands, to help improve timely and affordable access for patients to new medicines. OIFE had a patient representative present to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines, unmet…
We are happy to announce that the Annual General Meeting has voted in favor of accepting OIF GHANA as a new associate member of OIFE. We now have 35 member organizations in our umbrella. Osteogenesis Imperfecta Foundation Ghana was established in May 2017 and is led by chair Justina Yiadom-Boakye. In the article below you…
No time to rest. Tomorrow representatives from OIFE and OIFE’s Medical Advisory Board will be leaving for Salzburg to attend 9th International Conference on Children’s Bone Health which takes place from June 22nd – 25th. Hopefully we will have some time to post about our impressions. OIFE is also part of the ad hoc organizing…
From Friday 14th of June to Saturday 15th, Riga, Latvia was the place to be for the OI community. On Friday, the sun was shining, temperatures were high, people in the streets wore summer clothes and highly-needed sunglasses, stopping every now and then to appreciate the beauty of the city or some refreshments at a…
