Soft Bones

New Patient Orientation Meeting - March 18, 2026 at 12 PM Eastern
2026-03-18 12:00 - 13:00 (America/New_York) | Online
Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on March 18th at 12 PM Eastern for a virtual Zoom meeting.
This is an opportunity to meet some of our team, hear about our HPP resources, learn about our programs, and much more!

Please contact us HERE, to learn more and register.

HPP AND ME Live Zoom Chat - March 18, 2026 at 8 PM Eastern
2026-03-18 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on March 18, 2026, at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

TAC Meeting: Guided Art Session March 23, 2026 at 8 PM Eastern
2026-03-23 20:00 - 21:00 (America/New_York) | Online
🚨 RSVP Needed for TAC Art Session 🚨

Calling all Teen Advisory Council members!

Join us on March 23rd at 8 PM Eastern for our TAC Art Night. Please RSVP by February 20th so we can send your painting supplies in time, and reply to our email to secure your spot and supplies!

Interested in joining TAC? Fill out the form, HERE. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME UK Live Zoom Chat - March 24, 2026
2026-03-24 15:00 - 16:00 UTC | Online
Attention all UK HPP members!
Ash F. and Meryl C. are hosting an HPP AND ME Zoom Chat for all patients, caregivers, and families living in the UK on March 24, 2026, 8 PM GMT (Greenwich Mean Time). We’d love to see you there!
Registration is required. Please register HERE.
Join the HPP AND ME UK Forum: HERE

STRENSIQ Perspectives - March 25, 2026
2026-03-25 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on navigating treatment with STRENSIQ!

Join Alexion, AstraZeneca on March 25th at 7 PM Eastern for a virtual meeting. Learn more about STRENSIQ from an experienced HPP healthcare provider, HPP patient, or caregiver, and OneSource™ Case Manager. Registration is required. Please register below. https://strensiq.com/events

Registration before the event is required to receive a link to the webinar. Register HERE.

HPP AND ME Live Zoom Chat - April 14th at 1 PM Eastern
2026-04-14 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on April 14th at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

HPP AND ME Live Zoom Chat - April 16th at 8 PM Eastern
2026-04-16 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on April 16th at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

Join Us for a Northeast In-Person Meeting - April 25, 2026 at 11 AM Eastern
2026-04-25 11:00 - 13:00 (America/Halifax)
🎉 Registration is now open!

Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join us for the Northeast Region In-Person Meeting on April 25 at 11 AM Eastern.

Region Leads Amy W., Judith H., and Laura T. will host the gathering at Dave & Buster’s near Times Square, where a light lunch will be provided. It’s a great chance to meet others from your region, share experiences, and build community.

📅 Registration is required and closes April 11, 2026. Be sure to reserve your spot HERE!

Join Us for a Northwest In-Person Region - May 17, 2026 at 11 AM Pacific Time
2026-05-17 11:00 - 14:00 (America/Denver)
Registration is now open! 🎉

Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Join us in Penn Valley, CA!

Northwest Region Leads, Scarlett P. and Haley T., will host an in-person luncheon on May 17, 2026, from 11 AM-2 PM Pacific Time. Catch up with your Region Leads and connect with others in your area. Lunch will be provided.

Registration is required and will close on May 3, 2026. Register HERE.

Remember to join the HPP AND ME Northwest Forum: HERE.

2026 National Patient Meeting - Registration is Now Open!
2026-06-26 14:00 - 2026-06-27 17:00 (America/Halifax) | Chattanoogan Hotel, 1201 Broad St, Chattanooga, TN, 37402
Registration is now open for the 2026 National Patient Meeting, taking place in Chattanooga, TN.
Join us on June 26-27 for an informative gathering where individuals and families affected by HPP can connect, share experiences, and learn directly from leading experts in HPP. Check out our agenda for an overview of the planned events and speakers.
There is no registration fee to attend the meeting, and there is a limited number of travel grants available. Don’t miss this opportunity to learn, connect, and be part of the HPP community.
Register Now!

4th Annual Denim and Diamonds Fundraiser - Save the Date!
2026-09-12 17:30 - 21:30 (America/Halifax) | Harvest Hall at Alstede Farms, 100 Rte 24, Chester, 07930, United States
Save the Date for our 4th Annual Denim and Diamonds Fundraiser!

The Soft Bones’ Annual Denim and Diamonds fundraiser will be held later this year to soak up the late summer rays and harvest season. Join us on Saturday, September 12th, at Alstede Farms, as we enjoy the crisp air and the peak harvest season. It’s the perfect time to dust off your denim, add a little sparkle, and Two Step for a great cause.

There will be:
🤠Live Music and Dancing
🍖 BBQ
💎Silent Auction

Date: September 12, 2026
Location: Alstede Farms, 100 Rte 24, Chester, NJ 07930
Time: 5:30 PM – 9:30 PM

Registration link coming soon! Mark your calendars and get ready to celebrate the changing of the season.

Interested in donating a Silent Auction item or being a sponsor? Please contact Jessica at Jessica@softbones.org for more information.

18th Annual Golf Classic and 3rd Annual Pickleball Tournament- SAVE THE DATE
2026-09-28 10:00 - 18:00 (America/Halifax) | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Save the Date! ⛳
Get ready to tee it up or dink for a great cause! We’re excited to announce that the 18th Annual Soft Bones Golf Classics and 3rd Annual Pickleball Tournament will take place on Monday, September 28, 2026, at Somerset Hills Country Club.
Join us for a day of friendly competition and community, all while supporting people living with hypophosphatasia (HPP). Please stay in the loop, sign up for our emails, and be the first to know when registration opens!
Registration link coming soon!
