Join OIFE and other stakeholders at RareConversations: Advancing Rare Disease Healthcare! A live global forum bringing together rare disease advocates, experts, and patient voices to spotlight the economic and health system burden of rare diseases and explore how insights can drive meaningful change. The sessions will be on Tuesday, 23 Sept. 2025: Session 1: 07:00…
Interview with Tenna Toft Sylfest, XLH Alliance OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on OI and other rare bone conditions (RBDs). The project has several subprojects and activities. We are formal…
Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their…
