Newly Diagnosed

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

Our welcome kit can be delivered electronically or through the mail to give you a personalized overview of HPP resources. Please request a packet below.
Request a Welcome Kit

View Our HPP Resources

Hypophosphatasia (HPP) is a metabolic disease that can affect more than just your bones. Knowing more about HPP can help you better manage your disease.
Read More

Be in control of your HPP!

Track your symptoms, medication, doctors appointments, and more—all on the myHPP app. Patient participation is the single most critical component of the myHPP app.
Learn More

Join HPP AND ME

HPP AND ME is our online community forum that connects patients, families and caregivers. Find answers to your disease specific questions, share stories and meet others, all in a secured environment.
HPP AND ME

Read Our Patient Stories

Sharing our HPP stories and actively listening to others is a powerful way to learn and not feel alone. More often than not, you'll find that someone has faced or is currently navigating a journey similar to yours. Meet our Patient of the Month and past patient stories.
Read Now

Get a P.A.L (Partner And Learn)

Be matched with a fellow patient, caregiver, or parent who can provide peer support, encouragement, and education as you navigate a new diagnosis.
Request a P.A.L

Attend an Upcoming Event

Get invovled in our HPP community. Join us for local, national, and virtual meetings to build community, support, and raise awareness of HPP. There is something for everyone!
View Calendar

Identify Your Region and Meet Your Region Leads

Whether held virtually or in-person, region meetings are a way to connect with other HPP members from your region. Region Leads provide localized support and spearhead awareness and fundraising efforts. Join us!
Learn More

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

Soft Bones has partnered with the CoRDS to create an International HPP Contact Registry. Once enrolled, you'll receive emails about HPP research opportunities. Your information is completely anonymous until you choose to share it. Participants must maintain an updated profile and refresh contact information annually. Registration is available in multiple languages.
Join Now

Download the myHPP App!

We see our HPP community as partners in research. Our health data contains valuable information that holds the key to scientists’ most pressing questions about HPP. Patient participation is the single most critical component of the myHPP app. Help us identify the needs of patients and families to create evidence-based approaches and uncover new goals for therapies.​
Learn More

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

Mail Address
The US Hypophosphatasia Foundation
141 Hawkins Place, #267
Boonton, NJ 07005, USA.

Organization

Programs

Community

Office Address
1719 NJ-10, Suite 315
Parsippany, NJ 07054

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