Hypophosphatasia: The U.S. Soft Bones Foundation

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Boonton, NJ
Hypophosphatasia: The U.S. Soft Bones Foundation

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A U.S.-based 501c3 non-profit organization providing education, awareness, and support for those living with hypophosphatasia, their families, and caregivers.

HPP, Hypophosphatasia support, HPP research, patient support

11/05/2026

Join us November 19, 2026, for our HPP AND ME Zoom Chat at 8 PM EST.

This is a valuable opportunity to connect with others and to share insights.

Registration is required. Note: the link comes directly from Zoom.

Registration Link: https://ow.ly/YtY75103J1B

11/05/2026

Join Alexion, AstraZeneca, for an upcoming EMPOWERED event in Bethlehem, PA, on Saturday, November 14!

Connect with the HPP community and learn more about STRENSIQ® and available treatment resources at this in-person event.

Saturday, November 14, 2026
📍 Historic Hotel Bethlehem
437 Main St, Bethlehem, PA 18018

Registration: 10:30 AM ET
Program Begins: 11:00 AM ET

Learn more about this upcoming event through the QR code attached.

11/04/2026

Registration is now open! 🎉

Do you live in Arkansas, Colorado, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, or Wyoming?

Join us in Parker, CO!

Region Lead Nisha P. is hosting an in-person meeting on Saturday, December 12th, starting at 10 AM MST. All Central Region members and families are welcome. Connect and chat with others from your region. Refreshments will be served.

Registration is required and will close on November 29, 2026. Register below. 👇

https://ow.ly/VGZL5103TBW

11/04/2026

Calling all HPPers from the UK!

Join us for our next UK Zoom Chat on November 19, 2026 at 7 PM GMT. This is a valuable opportunity to connect with others near you and to share insights.
Registration is required. Please register below.
https://ow.ly/y0xG5102yi6

Shortly after you register, Zoom will email you a personalized link to join.

Join the HPP AND ME UK forum below:
https://ow.ly/guA35102yi5

11/04/2026

A heartfelt thank you to everyone who made individual donations, purchased a beach towel, participated in our recent HundredX fundraiser, and to Invest in Others for helping us achieve our fundraising goals to make this weekend possible!

Your participation helped support the Soft Bones 3rd International Scientific Meeting, taking place November 6–8 in New York City. This meeting brings together leading researchers and healthcare professionals from around the world to share knowledge and explore ways to advance our understanding of hypophosphatasia (HPP).

Thank you for taking the time to support Soft Bones and helping us move HPP research forward!

11/03/2026

When you're living with HPP, even small changes in how you feel can be important. But over time, those details can be easy to forget.

With myHPP, you can track symptoms and changes in your health as they happen, creating a record to look back on and discuss with your healthcare team.

The information you choose to share also helps support HPP research through secure, de-identified real-world data, giving researchers valuable insight into what living with HPP looks like over time.

Take a few minutes today to check in with yourself and update myHPP. Your experiences matter.

Learn more: https://ow.ly/lAv05103opW

11/03/2026

What does it mean to have a variant in the ALPL gene?

A variant is a change in the gene’s DNA sequence. But finding a change does not automatically mean that it causes HPP.

Genetic reports classify variants according to the available evidence. Some are benign or likely benign. Others are pathogenic or likely pathogenic, meaning they can cause disease. A “variant of uncertain significance” means there is not yet enough evidence to determine its role.
Understanding a result requires looking at it alongside symptoms, medical history, and laboratory findings with a knowledgeable healthcare professional.

Developed with Professor Wolfgang Högler, MD, FRCPCH, the Soft Bones Guide to Understanding HPP Genetic Variations explains these distinctions.

Read the guide:
https://ow.ly/NPc85102y7E

11/02/2026

NEW DATE! Teen Advisory Council Meeting Rescheduled

Our next Teen Advisory Council meeting is now Monday, November 9, at 7:30 p.m. Eastern!

We'll be joined by guest speaker Morgan S., who will share her experience of becoming an EMT and what it's like to work in emergency medical services. We'll also be getting creative with a fun narwhal art project!

Teens with a connection to HPP are welcome to join, including those living with HPP, teen siblings, and friends.

Interested in joining us? Send us a message so we can arrange to get art materials to you before the meeting!

11/02/2026

Did daylight saving time impact your sleep?

Sleep and pain can shape one another. Pain can interrupt rest, and poor sleep can make pain harder to manage.

In his pain-management presentation at the 2025 Soft Bones National Patient Meeting, Alan Hoang, MD, discusses sleep as an important predictor of pain severity and explains why supporting better-quality sleep may help some patients.

A consistent sleep and wake routine may be one part of that support. These habits belong within a broader approach to care, alongside treatment for HPP and chronic pain.

If pain regularly interrupts your sleep, or sleep difficulties persist, bring that into the conversation with your healthcare team.

Watch the complete presentation:
https://ow.ly/nFSO51032LI

11/02/2026

November is National Family Caregivers Month. 💜

Across the HPP community, caregivers help manage appointments, treatments, mobility needs, school accommodations, insurance questions, and countless parts of everyday life. Many are also living with HPP themselves while caring for a child or another family member with the condition.

This month, we celebrate the difference caregivers make in the lives of those they love.

To every caregiver in our community: we see you, we appreciate you, and we are here for you.

Address

141 Hawkins Place #267
Boonton, NJ
07005

Telephone

+18668279937

Website

https://softbones.org/

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