When Nicole Croxton and Pete Nappi first learned that they were going to have another daughter, the pair were thrilled. But during the course of Nicole’s pregnancy, doctors filled…
Ultragenyx Pharmaceutical Inc. has just announced the first dosing in their Phase 2/3 trial investigating setrusumab (UX143) as a treatment for osteogenesis imperfecta (OI) patients. This trial is called Orbit,…
According to a news release from biopharmaceutical company Mereo BioPharma Group plc ("Mereo"), the Osteogenesis Imperfecta Foundation (OIF), and the Osteogenesis Imperfecta Federation Europe (OIFE), enrollment is now complete for…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
2004 The pain in my right hip had periods of being intense. When the hip became unstable, I decided to visit my ortho. He took one look at it and…
1967 In 1967 my ortho said "this has to stop." I would just get out of traction; then a cast; heal; then be able to walk for 2 months and…
I was born in 1960 in Chicago, IL and they knew something was wrong seconds after my birth; what, they had no idea. My mother (I was her 3rd child)…
According to a story from BioSpace, the biopharmaceutical company Mereo BioPharma Group recently announced that its investigational therapy setrusumab has earned Rare Pediatric Disease designation from the US Food and…
Meet 29 year-old Cary Velazquez -- make-up artist in Puerto Rico with the rare disease osteogenesis imperfecta (OI), (also known as “brittle bone disease” and “glass bones disease”) who has…
What is osteogenesis imperfecta? Osteogenesis imperfecta (OI) actually refers to a group of four distinct rare disorders- OI Type I, II, III, and IV. They're all characterized by brittle bones which…
Watch this and try NOT to get into the Christmas/holiday spirit! What makes this even better is that this annual Christmas lights display is put on to help raise money…
2018 OIF National Conference This conference is available to children and adults affected by osteogenesis imperfecta and their families. It will serve as an opportunity to meet other members of…
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