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.
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.
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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.
PRESIDENT AND FOUNDER
VP AND FOUNDING BOARD MEMBER
Adam Grenker, Esq
Brenda Ziegler, DO
DATABASE/ CRM AND EVENT COORDINATOR
Scientific Advisory Board
Michael P. Whyte, MD, Chairman
Thomas O. Carpenter, MD
Kathryn McCrystal Dahir, MD
Matthew T. Drake, MD, PhD
Gary S. Gottesman, MD
José Luis Millán, PhD
Lothar Seefried, MD
Jill Simmons, MD
Peter Tebben, MD
Timothy Wright, MS, DDS