Heavy snowfall didn’t stop osteogenesis imperfecta from being well represented at an educational seminar on challenges and possibilities in advanced therapies. The event was hosted on 13 March 2023 by Oslo University Hospital in Norway. Rebecca Tvedt Skarberg was on the organizing committee, Inger-Margrethe Stavdal Paulsen from Norsk Forening for Osteogenesis Imperfecta (NFOI) gave a talk about…
Interview with Professor Gerard Pals, biochemist (MSc) and geneticist (PhD) at the VU university hospital in Amsterdam, The Netherlands Who are you and what is your relationship to OI? I am a biochemist (MSc) and geneticist (PhD). In 1989 I started a diagnostic laboratory for DNA and protein testing of inherited diseases, including OI, at…
Dr. Lidiia Zhytnik is a post-doc researcher at UMC Amsterdam, The Netherlands and a member of OIFE’s Medical Advisory Board. She has been part of a team who made a narrative review to systematize novel insights into OI genetics, reproductive options, family planning, decision-making and ethical issues. The team aimed to fill the existing gaps…
EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…
