Through an array of programs and services, Soft Bones fulfills its mission to support patients, families, physicians and other members of the HPP community.
Patient Education Webinars
Soft Bones offers ongoing educational webinars with top HPP experts in order to further educate patients and the larger HPP community. The webinars, which are offered live, can also be found on the Soft Bones YouTube channel or in Webinars in the Soft Bones Resource Library on our website.
Soft Bones sponsors Regional and National Patient Meetings, both online and in-person, throughout the calendar year to allow members of the HPP community to make meaningful connections with others while simultaneously becoming more educated about their rare disease. Visit our event calendar to learn more about upcoming meetings.
See our Resource Library for a full list of available resources, including educational fact sheets, scientific journal articles, literature that can be provided to physicians learning about HPP, and cutting-edge research information.
Soft Bones is pleased to present our podcast, bō-nǝ-fīde HPP. This podcast is designed to educate and
support the families & caregivers of those affected with HPP. As a mother and caregiver, host Deborah Fowler has discussions about this rare genetic bone disease with people from all over the world. Bō-nǝ-fīde HPP can be found on Spotify or in Podcasts in the Soft Bones Resource Library on our website.