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)…
Unmask HPP Webinar Educational Event December 7th, 2020 at 6:00 pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment…
Unmask HPP Webinar Educational Event December 1st, 2020 at 6:30 pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment…
Unmask HPP Webinar Educational Event November 18th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option.…
Unmask HPP Webinar Educational Event November 5th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option.…
Unmask HPP Webinar Educational Event October 28th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option.…
Unmask HPP Webinar Educational Event October 22nd, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option.…
Unmask HPP Webinar Educational Event October 13th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option.…
Stand With HPP Live Webinar June 9th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
Stand With HPP Live Webinar May 28th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
Stand With HPP Live Webinar May 6th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
Stand With HPP Live Webinar April 16th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
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…
2018 International HPP Meeting This is an invitation only event open to physicians, scientists, and researchers. The Soft Bones Scientific Advisory Board will be responsible for sending invitations and determining…
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…
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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