STRENSIQ Perspectives - August 20, 2025
2025-08-20 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on August 20th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

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

HPP AND ME Live Zoom Chat - August 28, 2025
2025-08-28 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on August 28, 2025, 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.

Join Us for an In-Person Southeast Region Meeting - August 30, 2025
2025-08-30 10:00 - 14:00 (America/New_York)
Calling all HPP members from Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, and Tennessee.

Meet us in Kissimmee, FL!

Join Southeast Region Lead, Scott G., for an in-person meeting on Saturday, August 30, 2025, from 10 AM – 2 PM Eastern. Connect with fellow HPP members, share stories, and learn more about our programs. Deana Brown, OneSource Case Manager, will be available to answer questions and engage in conversations. Lunch will be provided.

Registration is required and will close on August 16, 2025. Register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a Northeast Zoom Chat - September 8, 2025 at 7 PM Eastern
2025-09-08 19:00 - 20:00 (America/Halifax)
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?
Join Northeast Region Leads for a Zoom Chat on Monday, September 8th at 7 PM Eastern. This is a great opportunity to meet and catch up with fellow members from your region. We hope to see you there!
Registration is required. Please register below.
The Region Lead Program is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat - September 23, 2025
2025-09-23 20:00 - 21:00 (America/Halifax) | Online
Register for your spot today!

Join us on September 23, 2025, 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.

HPP Empowered: September 24, 2025 at 7:00 PM Eastern
2025-09-24 19:00 - 20:00 (America/Halifax) | Online
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on Wednesday, September 24, 2025, at 7:00 PM ET.
Register HERE.

Presented by Alexion AstraZeneca Rare Disease.

17th Annual Golf Classic and 2nd Annual Pickleball Tournament- Day of Play
2025-09-29 10:00 - 18:00 (America/Halifax) | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Registration for the 17th Annual Soft Bones Golf Classic and 2nd Annual Pickleball Classic is now closed. If you are attending golf or pickleball, below, you will find the day of play details. Please contact Jessica at Jessica@SoftBones.org for any questions or concerns.

Golf Day of Play: HERE
Pickleball Day of Play: HERE

Whether you’re teeing off, playing pickleball, or cheering from the sidelines, your presence and generosity amplify hope for families battling HPP.
Thank you to Atlantic Health System for being our tournament sponsor.

2025 Cannonball 5K Run, Roll, or Stroll
2025-10-01 00:00 - 2025-10-31 00:00 (America/Halifax) | Online
Ready! Set! Go!
Registration is now open for the 4th Annual Cannonball 5K Run, Roll or Stroll. From now until October 31st, challenge yourself and friends to finish a 5K! Complete this in a single day or pace yourself to hit your goal. Gather your friends and family to participate locally or virtually.

Sign up directly: HERE

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Visit our Cannonball 5K page to learn how you can participate and support us!

This event is sponsored in part by Alexion, AstraZeneca Rare Disease

STRENSIQ Perspectives - October 23, 2025
2025-10-23 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca Rare Disease on October 23rd at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

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

Join Us for an In-Person Midwest 1 and Midwest 2 Region Meeting - October 25, 2025
2025-10-25 11:00 - 13:00 (America/New_York)
Do you live in Illinois, Indiana, Iowa, Kentucky, Michigan, Minnesota, Ohio, West Virginia, or Wisconsin?

Join us in Madison, IN!

Join Midwest 1 Region Lead, Cindy R., and Midwest 2 Region Lead, Jennifer W., for a luncheon on October 25, 2025, from 11 AM – 1 PM Eastern. Connect with patients from your region and neighboring states, too! Lunch will be provided.

Registration is required and will close on October 19th. Please register HERE.

Following the meeting, attendees can participate in our Annual Cannonball 5K Run, Roll, or Stroll. Learn how you can participate HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for an In-Person Southwest Region Meeting - October 25, 2025
2025-10-25 11:00 - 14:00 (America/Denver)
Calling all HPP families from Arizona, Hawaii, Nevada, New Mexico, Southern California, and Utah.

Meet us in Tempe, AZ!

Join Southwest Region Leads for a luncheon on Saturday, October 25, 2025, from 11 AM – 2 PM MST.

All Southwest Region members and families are welcome. Dr. Pamela Smith from Phoenix Children’s Hospital will be presenting. OneSource Case Managers, Joan Gustin and Angela Corso, will be there to chat and field questions. Light lunch/finger foods and soft drinks will be served. We hope to see you there!

Registration is required and will close on October 11, 2025. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a In-Person Midwest 1 Region Meeting - October 25, 2025
2025-10-25 11:30 - 14:00 (America/New_York)
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?

Join us in Madison, WI!

Region Leads Gerald G. and Jan R. will be hosting a luncheon on October 25, 2025 from 11:30 AM – 2:00 PM Central. All Midwest 1 Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families. Lunch will be provided.

Registration is required and will close on October 19th. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

World HPP Day - October 30, 2025
2025-10-30
We are getting ready for World HPP Day, recognized on October 30th. This is a time for the HPP community to come together and raise awareness about hypophosphatasia (HPP).
This year, we celebrate the progress we’ve made, but recognize how far we still have to go in understanding the impact of low alkaline phosphatase (ALP) in the body and how it can go undetected for many years.

When something is glaringly present and not addressed, we say there’s an “elephant in the room.” However, with our HPP mascot, the HIPPO, it’s time to acknowledge the “HIPPO in the room.”

Visit our page to learn how you can get involved HERE.

Together, we can raise awareness and identify the Hippo in the room!

HPP AND ME Live Zoom Chat - October 30, 2025
2025-10-30 13:00 - 14:00 (America/Halifax) | Online
Register for your spot today!

Join us on October 30, 2025, 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 - November 13 at 8PM Eastern
2025-11-13 20:00 - 21:00 (America/Halifax) | Online
Register for your spot today!

Join us on November 13, 2025, 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 In-Person Central Region Meeting - November 16, 2025
2025-11-16 15:00 - 17:00 (America/Denver) | Dave and Buster’s, 2000 S Colorado Blvd, Denver, CO, 80222, United States
Do you live in Arkansas, Colorado, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, or Wyoming?
Join us in Denver, CO!
Soft Bones’s Region Lead, Nisha P., is hosting a Central Region Meeting on November 16, 2025. From 3-5 PM Mountain Time, connect with other members from your region. Refreshment will be provided. All Central Region members and their families are welcome to attend this local gathering. This is a time to connect and meet your local support system.
Registration is required and will close on November 9, 2025. Please register HERE.
We hope to see you there!
If you have any questions, please reach out to Cindy@SoftBones.org. This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Teen Advisory Council Event - Resilience
2025-11-17 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) teens!
We are excited to have Seth Rotberg, a nationally recognized patient advocate, TEDx speaker, and healthcare leader, as our guest speaker at the next Teen Advisory Council (TAC) meeting on November 17, 2025, at 8:00 PM Eastern.
Read his full bio, HERE.
Join us for our next TAC meeting on November 17, 2025, at 8:00 PM Eastern to talk about resilience and what it means. Check your email to RSVP for your spot!
Interested in joining TAC? Fill out the form, HERE. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

STRENSIQ Perspectives - December 9, 2025
2025-12-09 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on navigating treatment with STRENSIQ!

Join Alexion, AstraZeneca on December 9th at 7:00 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 - December 11 at 1 PM Eastern
2025-12-11 13:00 - 14:00 (America/Halifax) | Online
Register for your spot today!

Join us on December 11, 2025, 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 - January 15, 2026 at 8 PM
2026-01-15 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on January 15, 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.

HPP AND ME UK Live Zoom Chat - January 21, 2026
2026-01-21 14:00 - 15:00 (America/New_York) | Online
Attention all UK HPP members!

Soft Bones is hosting an HPP AND ME Zoom Chat for all patients, caregivers, and families living in the UK! Join Cindy R., Ash F., and Meryl C. as they host a meeting on January 21, 2026, at 2 PM Eastern/7 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

Teen Advisory Council Event - Trivia Night
2026-02-09 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) members! Mark your calendars for our first meeting of 2026, scheduled for Monday, February 9, 2026, at 8:00 PM. We will be unveiling our brand-new Rare Disease page, brainstorming a painting event for March, and wrapping up with a fast-paced trivia game.​​​​​​​
The winner of trivia night will walk away with something special. Please check your email to RSVP for your spot. We look forward to seeing you there!
Interested in joining TAC? Fill out the form, HERE. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat – February 17, 2026 at 2 PM Eastern
2026-02-17 14:00 - 15:00 (America/New_York) | Online
Register for your spot today!

Join us on February 17, 2026, at 2 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 - February 19, 2026 at 8 PM Eastern
2026-02-19 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on February 19, 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.

HPP AND ME UK Live Zoom Chat - February 21, 2026
2026-02-21 14:00 - 15:00 (America/New_York) | Online
Attention all UK HPP members!
Soft Bones is hosting an HPP AND ME Zoom Chat for all patients, caregivers, and families living in the UK! Join Ash F. and Meryl C. as they host a meeting on February 21, 2026, at 2 PM Eastern/7 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

HPP Empowered: February 26, 2026 at 7:00 PM Eastern
2026-02-26 19:00 - 20:00 (America/Halifax) | Online
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?

Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on Wednesday, February 26th, at 7:00 PM ET.
Register HERE!

Presented by Alexion AstraZeneca Rare Disease.

Rare Disease Day- Just Around the Corner!
2026-02-28
Rare Disease Day is just around the corner. Are you ready?
This year, getting involved is easier than ever. Visit our Rare Disease Day page to explore all the ways you can participate: update your social media profile frame, share your story, listen to our podcast, join our Bingo challenge, and more. There’s something for everyone.
We encourage you to share these opportunities with friends and family who may not yet be familiar with rare diseases. Together, we can raise awareness, amplify voices, and make this Rare Disease Day unforgettable.
Learn more below: HERE

Join Us for a Northwest Region Zoom Chat - March 2, 2026
2026-03-02 19:00 - 20:00 (America/Denver)
Calling all HPP members from Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Join Region Leads, Haley T. & Scarlett P., for a Zoom Chat on March 2, 2026, at 7 PM Pacific Time. All Northwest Region patients and caregivers are welcome to connect and chat.

Registration is required. Please register HERE. Once you register, you will receive the Zoom join link directly via email from Zoom. We’d love to see you there!

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

Join Us for an Southeast Region Zoom Chat - March 5, 2026
2026-03-05 20:00 - 21:00 (America/Chicago)
Calling all HPP members from Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, or Tennessee?

Join Region Leads, Blynda K. and Tess O., for a Zoom Chat on March 5, 2026, at 7 PM Central/ 8 PM Eastern. All Southeast Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families!

Registration is required. Please register: HERE.
HPP AND ME Southeast Forum: HERE

After registering, you will receive the Zoom join link directly via email from Zoom. We’d love to see you there!

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.
