The American Society for Bone and Mineral Research (ASBMR) and Rare Bone Disease Alliance (RBDA) held the annual Symposium on Rare Bone Diseases this year on October 12. During…
When she was born, Savannha Aretino was diagnosed with hypophosphatasia, a rare genetic disorder characterized by bone and teeth development abnormalities. Now, twenty-three years later, Savannha is working to not…
October 30, 2021 will be recognized as World Hypophosphatasia Day, a time dedicated to spreading awareness among the medical field and the general public about hypophosphatasia, a rare and potentially…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Although it is still considered an experimental technique, gene therapy shows promise for treating a wide variety of genetic diseases or disorders. In a recent news release from the Sanford…
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)…
Asfotase alfa is an enzyme replacement therapy meant to directly address the cause of hypophosphatasia. While more research is necessary, it has been shown to decrease the mortality rate and…
According to a story from Medical Xpress, a team of researchers affiliated with the University of Granada and the research organization CIBERFES have discovered a pair of new mutations linked…
Rare disease isn't as rare as it sounds. Ten percent of Americans have a rare disease-- and there are almost 7,000 known rare diseases. A rare disease, also known as…
Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…
Nothing puts "fun" in a fundraiser than holding that event at Walt Disney World. For the past 25 years, Disney has hosted an annual marathon to help support hundreds of…
Did you ever consider who funds medical research? Most people assume that it's funded by the government. But, in fact, over half of the more than $100 billion (yes $100…
According to Today, Quinn Hoover is an 8-year-old boy who lives in Nebraska. His body doesn’t produce enough alkaline phosphatase enzyme, causing his bones to be extremely “soft." The condition…
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