@oioife
OIFE is the umbrella for organizations dealing with Osteogenesis Imperfecta.
OIFE Homepage
Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association for organizations dealing with the rare disease Osteogenesis Imperfecta (OI).
OIFE Magazine
News & resources - OIFE - Osteogenesis Imperfecta Federation Europe
The OIFE releases occasional news articles, a periodic magazine, updates on upcoming events and publishes the OIFE Passport.
Survey: Understanding Menopause and Women’s Health in OI
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Demystifying Clinical Trials: How They Work and Why They Matter - Patient Empowerment Through Education
Are you a patient or a caregiver? Have you ever wondered how new medical treatments reach patients? This webinar is designed specifically for patients and caregivers who want to understand the science and decisions behind their care and become an active part in it. Register to join us in this journey of learning, because knowledge is power when it comes to your health. What will you learn: * The phases of Clinical Trials and patient safety. * What HTA (Health Technology Assessment) means and how it impacts drug availability. * What is ERN BOND (European Reference network on Rare Bone Diseases) and how you can get involved and make your voice heard. Confirmed Speakers: * Claudia Fuchs Senior Project Manager Therapeutic Development at EURORDIS * Dalma Hosszu Head of Patient centricity and engagement at Syreon Research Institute * Luca Sangiorgi ERN BOND Coordinator
Balancing Life with OI - Videos on YouTube!
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