New to HPP

New to HPP?

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.

Here is how our community can help.

Looking for a doctor?

For a list of physicians that have experience with HPP, please contact us directly.

HPP Patient Registry

Soft Bones has partnered with Coordination of Rare Diseases at Sanford (CoRDS) to create an International HPP Contact Registry. Once your enrollment is completed, relevant HPP research opportunities will be communicated via email. Your information is completely anonymous. Only when you agree to participate or receive more information will your contact info be shared with a researcher. It is important that participants maintain an updated profile and refresh contact information annually. Registration is available in multiple languages. For more information contact CoRDS at or (877) 658-9192.