2nd Soft Bones International Scientific Meeting 2023
Join Soft Bones at our 2023 Scientific Meeting on June 2-4, 2023.
Typically, the earlier HPP symptoms become apparent, the more severe the condition. It is estimated that severe forms of HPP occur in approximately one of every 100,000 live births. While exact numbers are unknown, it is estimated that one out of every 200 Americans may be a carrier for HPP.
Diagnosis is generally made through x-rays and blood tests and the disease is classified based on the age at which symptoms first appear. The five main types of HPP are: Odonto, Perinatal, Infantile, Childhood and Adult. Researchers understand HPP is a genetic condition of the TNSALP gene, which is part of a patient’s genetic makeup, regardless of when it is diagnosed. However, a genetic diagnosis is currently not an adequate predictor of severity of disease. More research is underway and funded by Soft Bones to gain a better understanding of the genotype/phenotype relationship.
For more information, please see our publications created by HPP experts and members of the Soft Bones Scientific Advisory Board.
Watch Sessions On- Demand Now!
View all sessions from the 2023 National Patient Meeting on our virtual platform by clicking the button below.
Latest from Soft Bones
NEW DATE for Denim & Diamonds
Join Soft Bones in a fun filled night of dancing, food, auction items, and more!
Soft Bones Voice Of The Patient Report
A summary of our Externally- Led Patient- Focused (EL-PFDD) Meeting available now!
New Soft Bones Program!
Join our new program 'Stick it to HPP' which is for kids who are ready to take charge of their injections and gain independence
Newly diagnosed?
Whether you are a parent, a family member or you yourself have been diagnosed with hypophosphatasia (HPP), you have come to the right place. A diagnosis of HPP can be overwhelming. You may feel confused and scared, but enzyme replacement therapy and ongoing research provide a greater understanding of this rare disease.
There is hope for you and your family.
June Patient Of The Month
This month’s Patient of the Month spotlight features August!
Inspiring stories
Soft Bones Statistics
Soft Bones has been described as the bone disease with the greatest spectrum of severity. Every case is different, even with people who have identical mutations. Learn more
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Number of known HPP mutations
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Number of countries where HPP has been diagnosed (plus Puerto Rico)
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Years.
Average number of years a patient takes to get diagnosed
Average number of years a patient takes to get diagnosed
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Dollars awarded in research grants
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Upcoming HPP Featured Events
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HPP AND ME Live Zoom Chat
HPP AND ME Live Zoom Chat
Join the HPP community in an HPP AND ME live chat on June 8th, 2023 at 8:00 p.m. EDT. Meet the faces behind the names,…
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Unmask HPP Webinar: Tips For Traveling With Your Medication
Unmask HPP Webinar: Tips For Traveling With Your Medication
Register Today For This Informative Webinar. Presenter: Gnanagurudasan Prakasam, MD, Pediatric Endocrinology Are you navigating an HPP diagnosis? Whether you’re new to HPP or a…
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The Soft Bones Mission
The mission of Soft Bones, Inc. is to provide valuable information, education and support for people living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fundraising efforts.
Soft Bones is a 501(c)3 non-profit, US-based patient advocacy group dedicated to the community of patients, caregivers and families living with hypophosphatasia.
