OIFE advocates for patient involvement in all clinical trials and research for Osteogenesis Imperfecta (OI) and other rare diseases. Advanced Therapy Medicinal Products (ATMPs) are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. EURORDIS hosted two webinars about the topic: Webinar…
Interview with Natividad Alcorta Sevillano, PhD, Biobizkaia Health Research Institute, Spain (The header photo shows Dr. Sevillano with Dr. Lafaver and Dr. Crawford at OIF’s Investigator Meeting in Chicago) Tell us about yourself and your work with OI! My name is Natividad Alcorta Sevillano, and I am from a small town in the Basque Country…
The European Joint Programme on Rare Diseases (EJP RD) has made a preliminary announcement about the upcoming 2020 call for proposals for pre-clinical research to develop effective therapies for rare diseases like OI. A number of national and regional funding organisations will participate in the call, alongside the European Commission and the EJP-COFUND action, to…
Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…
