OIFE believes that all research projects affecting OI directly, should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project. Individual people with OI can be represented by persons from the “patient community”, which covers individual patients,…
OIFE is lucky to have two patient representatives (ePags) in ERN BOND – European Reference Network on Rare Bone Diseases. This week they have had an important meeting in Norway, to talk about how to improve care and services for people with rare bone conditions in Europe. Not sure what ERN is and does? We…
The International Children’s Bone Health Conference (ICCBH) is hosting a virtual forum from November 18-20 and we encourage professionals and patient representatives to attend. Target group The meeting programme of ICCBH Virtual Forum is designed for healthcare professionals and researchers. Pharma industry regulations do not allow open invitations to members of the public to attend. However,…
Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
