SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION
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Mission Statement
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.
About This Cause
As a rare medical condition, HPP presents signi ficant challenges to patients, their families and caregivers. Finding a physician who can diagnose and treat HPP is often challenging because few doctors have HPP-speci fic training or experience. Soft Bones encourages patients and their doctors to become a team, with the aim to address the patient needs and alleviate complications. There is a need to bolster education and training of HPP in the medical community—and to encourage medical staff to partner with patients in their treatment and care. Patients need more resources and support. Soft Bones supports research, education, awareness, and policy and patient advocacy. We award research grants to scientists working to understand and treat HPP. We work with the NIH to advocate for government funding for research, and with government agencies to ensure patients receive their entitled bene fits. Our role as a sounding board, advocate and resource to the newly diagnosed patient and caregiver is most important.