About – Soft Bones

Our Vision, Mission, and Core Values

Vision

Our vision at Soft Bones, Inc. is a world free of HPP, made possible through groundbreaking research, innovative treatments, education, awareness and support for all, ensuring every person affected can look forward to a brighter, healthier tomorrow.

Mission

Driven by patient and caregiver insights, Soft Bones Inc., inspires and galvanizes collective action to foster greater awareness, improve diagnosis, accelerate innovative research and treatments, and ultimately, improve care for those affected by HPP.

Core Values

Because patients can’t wait and we are passionate about making a difference:

We are accountable
We work with rigor
We lead with a servant’s heart
We embrace a can-do spirit
We show grit
We are nimble

About Us

Soft Bones is a 501(c)3 non-profit, US-based patient advocacy group dedicated to the community of patients, caregivers and families living with hypophosphatasia.

Soft Bones powers the HPP community by raising awareness of this rare, metabolic disease, providing hope by advocating for and funding research, and connecting patients with each other and with the medical community to advance the understanding of HPP. We provide medical information as well as a support system for patients and families living with HPP.

We believe a cure is possible. With modern-day science of gene editing and gene therapy, we work closely with researchers and clinicians to champion collaboration, reduce duplication of efforts, share findings and unite the global HPP community. We also work to position HPP as a favorable subject of research through our Global HPP Patient Registry.

We need your help to unlock the key to HPP. Hypophosphatasia is a serious condition. Scientists are still working to better understand the impact of low levels of alkaline phosphatase in the body: the hallmark of HPP is soft bones, but there is much more to understand. Join us in helping find the key.

Diversity, Equity and Inclusion

Diversity, equity and inclusion (DEI) is a term used to describe policies and programs that promote the representation and participation of different groups of individuals, including people of different ages, races and ethnicities, abilities and disabilities, genders, religions, cultures and sexual orientations.

Hypophosphatasia does not discriminate, and its effects can be felt by people of all genders, ages, races, ethnicities, socioeconomic statuses, religions, and sexual orientations. As a rare patient population, we have experienced first-hand the impact of what it feels like to be excluded, discounted and ignored.

As such, the mission of Soft Bones is to provide a place where HPP patients feel that they are not alone, which means our staff is committed to creating an environment that is free from discrimination, where everyone is welcomed and people come to connect, learn and ultimately thrive.

Our DEI work takes on many forms, from incorporating diverse viewpoints from patients with various levels of severity of HPP, to connecting with researchers from different backgrounds and cultures, to ensuring our materials are available in many different languages and in hard copies as well as online.

Every person deserves to be listened to, respected, and have access to high-quality healthcare. We are committed to helping all families improve their understanding of hypophosphatasia and build their health literacy in order to become more informed consumers of the healthcare system and become empowered to access the critical care their loved one needs and deserves.

View Our Interactive Programs & Services Sheet Below

Meet the Soft Bones Team

Soft Bones is comprised of staff members, a Scientific Advisory Board (SAB), a Board of Directors and Region Leads. The Soft Bones staff manages the daily operations of the foundation. The Scientific Advisory Board oversees material development to ensure medical accuracy and provides strategic guidance for research grants. The Board of Directors governs Soft Bones and monitors all activities. Region Leads provide localized support to a growing and geographically dispersed community.