New to HPP?
Welcome to our Soft Bones family. Whether you have just received a diagnosis of hypophosphatasia (HPP), or you have been living with HPP for some time, you will find a supportive community that understands what you are going through.
We are a patient advocacy group dedicated to the community of patients, caregivers, and families living with HPP. We have been helping families with HPP for more than a decade and are here to support you and help you navigate the road ahead.
Here is how our community can help.
Request a Doctor
Soft Bones has curated a physician list that includes a wide array of specialists who treat those with HPP. Are you looking for assistance finding a medical provider with HPP experience? Please contact us here.
Learn More About HPP
Whether you’re trying to learn more about HPP, or educate family members, your doctor, or even colleagues or friends, there’s a variety of resources including webinars, podcasts, and brochures to help you achieve your goal.
Request a Welcome Kit
View Our HPP Resources
Be in control of your HPP!
Join HPP AND ME
Read Our Patient Stories
Get a P.A.L (Partner And Learn)
Attend an Upcoming Event
Identify Your Region and Meet Your Region Leads
Opt Into Research
Soft Bones is dedicated to funding crucial research that deepens our understanding of HPP and paves the way to find a cure. Research enhances our knowledge of the disease, informs decision-making, and ultimately improves the quality of life for those affected.
Join the HPP Registry
Download the myHPP App!
Support Our Cause
There are many ways to support Soft Bones and the HPP community. Throughout the year, Soft Bones organizes a variety of impactful fundraisers, both seasonal and year-round, to support our mission. Learn how you can get involved and make a difference!
Meet Our Team
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. Our team is here to support you as you navigate this journey. Contact us for support.
Deborah Fowler
CHAIRMAN OF THE BOARD
Denise Goodbar
EXECUTIVE DIRECTOR
Cindy Reasor
PROJECT COORDINATOR
Sue Krug
PATIENT LIAISON
Margaret Robb
COMMUNICATIONS MANAGER AND PATIENT/CAREGIVER NAVIGATOR
Lucy George
PATIENT/CAREGIVER ENGAGEMENT COORDINATOR AND ADMINISTRATIVE ASSISTANT