For many people, a broken bone would severely interrupt their life. But six-year-old Avery Balcazar has learned to live with it—even when it’s tough. As reported by CBC News, Balcazar…
If you’re looking for drive and determination, look no further. 14-year-old Sophia Nohre is ready to tackle any obstacle in her path—and she does so relentlessly. Her swimming coach, Adam…
22-year-old Ruchita Sahukari is currently studying Literature and Sociology at the Indira Gandhi National Open University (IGNOU). Her journey to pursuing her degree began with the assistance of non-governmental…
12-year-old Rohit, who hails from Uttar Pradesh, India, has a dream to one day become a singer – and he’s ready to pursue that dream no matter what. Throughout…
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…
Mobility issues are common in patients with osteogenesis imperfecta (OI) - especially tendinopathy, or tendonitis. But why does this happen? According to Medical XPress, a study performed by Baylor College…
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…
According to a story from Financial Buzz, the biopharmaceutical company Mereo BioPharma Group plc recently announced that it has successfully concluded its Type B End-of-Phase 2 meeting with the US…
The charges against Baby Jace’s parents, Crystal Bryant (age 24) and Jarvis Bryant (age 27), seemed to imply that they were guilty until two doctors took a closer look.…
According to a story from Federal Telemedicine News, there are around 7,000 diseases known to science that can be considered a rare disease. When we consider these diseases in the…
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…
Phil Pavone owns a pawn shop in Norwich, Connecticut. It's called AZ Pawn. Now, in addition to being a businessman, he's practically created his own nonprofit. It all started one…
According to an article from Newswise, a team of researchers are studying tissue engineering for the repair of knee injuries such as a torn meniscus. The meniscus is the section…
Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state…
Shani Dhanda, 31, was at a loss-- she had sent hundreds and hundreds of job applications, and no one even interviewed her. The Birmingham woman stands at 3'10". She was…
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
