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About the channel
The Official YouTube Channel of Soft Bones, the Hypophosphatasia Foundation 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 fund-raising efforts. Soft Bones works on behalf of the HPP community to increase funding, awareness and necessary access for those with the disease. We are part of the Rare Bone Disease Advocacy Alliance allowing us to lobby for increased federal spending to accelerate research, track prevalence and develop drug treatments and therapies. We have conducted Congressional Briefings and hosted State House events in order to educate our leadership on HPP, rare diseases and the outstanding needs in our community. We have also successfully worked with the Social Security Administration in order to allow those with HPP access to disability benefits.
Latest videos
2026 Soft Bones NPM - Patient-Powered Science: From Your Cells to Better Care (Sun Peck, Ph.D.)
119 views · 07/13/2026
2026 Soft Bones National Patient Meeting - Navigating the HPP Physical Therapy Journey Donna Griffin
81 views · 07/13/2026
2026 Soft Bones National Patient Meeting - Dental Impacts of HPP (Timothy Wright, DDS, MS)
84 views · 07/13/2026
2026 Soft Bones National Patient Meeting - HPP Overview (J. Carl Pallais, MD, MPH)
232 views · 07/13/2026
Episode 3: Greg Schiano
33 views · 06/16/2026
Episode 15: Physical Therapy & HPP from a Patient and Provider Perspective
73 views · 04/09/2026
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