Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions

por Javaid, Muhammad Kassim, Mordenti, Marina, Boarini, Manila, Sangiorgi, Luca, Westerheim, Ingunn, Alves, Inês, Skarberg, Rebecca Tvedt, Appelman-Dijkstra, Natasha M., Grasemann, Corinna
Publicado 2021

The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review

por Rapoport, Maria, Bober, Michael B., Raggio, Cathleen, Wekre, Lena Lande, Rauch, Frank, Westerheim, Ingunn, Hart, Tracy, van Welzenis, Taco, Mistry, Arun, Clancy, James, Booth, Lucy, Prince, Samantha, Semler, Oliver
Publicado 2023

Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

por Smyth, Debra, Hytiris, Monica, Kelday, Coreen, McDonnell, Ciara, Burren, Christine, Gardner, Adrian, Mills, Lisa, Parekh, Susan, Semler, Oliver, Stewart, Angela, Westerheim, Ingunn, Javaid, Muhammad Kassim, Osborne, Patricia, Ahmed, S. Faisal
Publicado 2023