Soft Bones

Latest from Soft Bones

Meet Cindy Reasor

Cindy is Soft Bones' Project Coordinator seamlessly connecting with patients and leading our Region Lead program. As a driving force behind our National Patient Meeting and online fundraising efforts, her work is instrumental to our success.

Come Celebrate World HPP Day!

Visit our World HPP Day page to learn how you can celebrate and share your HPP story! Together we can raise awareness of HPP.

Meet October's Patient of the Month Kirra S.

Read about Kirra's journey with HPP.

Cannonball 5K Run, Roll, or Stroll is LIVE

Registration for the 3rd Annual Cannonball 5K Run, Roll, or Stroll is open! Complete a 5K now until October 31st to raise awareness and celebrate World HPP Day!

Looking to Support Soft Bones?

Shop for our cause! A portion of the proceeds from your purchases will benefit Soft Bones.

2024 Research Grant: Now Accepting Applications!

We are awarding a $25,000 seed grant that helps support and develops new research that answers our community’s most pressing issues.

Take Charge of Your Health!

Download the myHPP app to transform patient care and inform hypophosphatasia research. Become a valuable partner in research.

What is

HypoPhosPhatasia

or HPP?

Hypophosphatasia (hī-pō-ˌfäs-fə-ˈtā-zh(ē-)ə) or HPP is an inherited (genetic) metabolic disorder. People with this condition have low levels of the enzyme alkaline phosphatase (ALP), which often affects the development of bones and teeth.

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.

Is your bloodwork showing you have low AlkaLine Phosphatase or ALP?

Watch the 2024 National Patient Meeting Sessions On-Demand Now!

View our sessions and photo gallery from our meeting in Mason, OH here

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.

October’s Patient of the Month

This month’s Patient of the Month spotlight features Kirra S. 

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

Number of known HPP mutations
0
Number of countries where HPP has been diagnosed (plus Puerto Rico)
0
Average numberof years it takes a patient to get diagnosed
0
Dollars awarded in research grants
$ 0 k+

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