STRENSIQ Perspectives
2024-12-03 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on December 3rd at 7:00 PM Eastern for a virtual meeting. Learn how to navigate treatment with 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 at STRENSIQ.com/events.

New Patient Orientation Meeting
2024-12-04 20:00 - 21:00 (America/New_York) | Online
Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on December 4th at 8 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 register.

Appy Hour
2024-12-11 19:00 - 20:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them valuable research partners for better HPP treatment and care.

Join us on December 11, 2024, at 7 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Let’s take steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

HPP AND ME Live Zoom Chat
2024-12-17 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on December 17th 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.

Region Lead Orientation - December 27th
2024-12-27 11:00 - 12:00 (America/New_York) | Online
Calling all new and returning Region Leads for 2025.

Please join us on December 27th at 11 AM Eastern for a Region Lead Orientation. Registration is required. Please register HERE.

Region Lead Orientation - January 2nd
2025-01-02 20:00 - 21:00 (America/New_York) | Online
Calling all new and returning Region Leads for 2025.

Please join us on January 2nd at 8 PM Eastern for a Region Lead Orientation. Registration is required. Register HERE.

Region Lead Orientation - January 11th
2025-01-11 12:00 - 13:00 (America/New_York) | Online
Calling all new and returning Region Leads for 2025.

Please join us on January 11th at 12 PM Eastern for a Region Lead Orientation. Registration is required. Please register HERE.

Appy Hour
2025-01-15 13:00 - 14:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them valuable research partners for better HPP treatment and care.

Join us on January 15, 2025, at 1 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Let’s take steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

HPP AND ME Live Zoom Chat
2025-01-23 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on January 23, 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.

New Patient Orientation Meeting
2025-01-23 20:00 - 21:00 (America/New_York) | Online
Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation Meeting on January 23rd, 2025, at 8 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 register, HERE.

Region Lead Orientation - January 24
2025-01-24 12:00 - 13:00 (America/New_York) | Online
Calling all new and returning Region Leads for 2025.

Please join us on January 24th at 12 PM Eastern for a Region Lead Orientation. Registration is required. Please register HERE.

Teen Advisory Council Event - Presentation Skills
2025-02-03 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) teens!
We are so excited to kick off our first Teen Advisory Council meeting of 2025 with a speaker!
Communications guru, advocate, and public speaker, Jen Zoller of Green Room Communications, will present at our next meeting on Friday, February 3rd at 8:00 PM Eastern Time. She will teach us how to confidently answer questions like, “What is HPP?” or “What is the Teen Advisory Council?”.
Don’t miss this opportunity! TAC members, please check your emails to reserve your spot.
Interested in joining TAC? Please contact us HERE for more information.
TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Tutorial
2025-02-11 14:00 - 15:00 (America/New_York)
Soft Bones will host an HPP AND ME Zoom Tutorial on February 11, 2025, at 2 PM Eastern. Come learn the tips and tricks on navigating HPP AND ME. There are many forums and conversations you can join!

Registration is required. Please register HERE.

HPP Empowered: February 19, 2025 at 7:00 PM Eastern
2025-02-19 19:00 - 20:00 (America/New_York) | 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 19th, 2025, at 7:00 PM ET.
Register HERE.

Presented by Alexion AstraZeneca Rare Disease.

Rare Disease Day- One Month Away!
2025-02-28
We are one month away from Rare Disease Day!
Rare disease affects 1 in 10 Americans. Did you know many great organizations are supporting those living with rare diseases? This year we will be highlighting organizations and partners that help to identify the challenges and address the needs of the rare disease population.
Visit our Rare Disease Day page to learn about each and how you can get involved on February 28th HERE.

Show Your Stripes - HPP Chat
2025-02-28 13:00 - 14:00 (America/New_York)
Come celebrate Rare Disease Day and Show Your Stripes with us at our Virtual Rare Disease Day HPP Zoom Chat!
Join us on February 28, 2025, from 1-2 PM Eastern. Let’s connect, raise awareness, and show our stripes.
Registration is required. Please register HERE!

STRENSIQ Perspectives - March 11, 2025
2025-03-11 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on March 11th 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 - March 25, 2025
2025-03-25 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on March 25, 2025, EDT 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.

STRENSIQ Perspectives - March 27, 2025
2025-03-27 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on March 27th 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 Northeast Region Meeting
2025-04-12 12:00 - 14:00 (America/Chicago) | Cafe Nero, 75 Fountain Street, Providence, RI, 02903, United States
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Meet us in Providence, Rhode Island!

Join Deb Fowler, Founder and Chairman of the Board, for a Northeast Region meet-up on April 12 at 12:00 PM Eastern. Connect with fellow HPP members, share stories, and learn more about our programs. Light refreshments will be provided.

Registration is required and will close on April 7th. Register HERE.

If you have any questions, please reach out to Cindy@SoftBones.org.

New Patient Orientation Meeting - April 14, 2025
2025-04-14 20:00 - 21:00 (America/New_York) | Online
Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on April 14th at 8 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 register.

HPP Empowered: April 16, 2025 at 7:00 PM Eastern
2025-04-16 19:00 - 20:00 (America/New_York) | 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, April 16th, 2025, at 7:00 PM ET.
Register HERE.

Presented by Alexion AstraZeneca Rare Disease.

Southwest Region Zoom Meeting and Chat - April 17, 2025
2025-04-17 20:00 - 21:00 (America/Chicago) | Online
Do you live in Arizona, Hawaii, Nevada, New Mexico, Southern California, or Utah?

Join Region Leads Amy B., Sue K., and Adam W. for a Southwest Zoom Chat on Thursday, April 17th at 6 PM MST/9 PM Eastern. This is a great opportunity to meet and catch up with fellow members from your region. It’s going to be a relaxed and friendly chat, and we’d love to see you there!

Registration register HERE.

If you have any questions, please reach out to Cindy Reasor (Cindy@SoftBones.org).

HPP AND ME Live Zoom Chat - April 24, 2025
2025-04-24 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on April 24, 2025, 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.

Southeast Region Zoom Meeting and Chat - April 26, 2025
2025-04-26 15:00 - 16:00 (America/New_York) | Online
Do you live in Alabama, Georgia, Florida, Mississippi, North Carolina, South Carolina, or Tennessee?

Join Region Leads Blynda K., Scott G., and Tess O., for a Southeast Region Zoom Meeting on Saturday, April 26th at 3 PM Eastern. Meet your newest Region Lead, Tess O., and connect with others in your region. Don’t miss out!

Please register HERE.

If you have any questions, please reach out to Cindy Reasor (Cindy@SoftBones.org).

Join Us for an In-Person Midwest 1 Region Meeting - April 27, 2025
2025-04-27 10:00 - 13:00 (America/Chicago)
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?
Join Midwest 1 Region Lead, Jan R. for a luncheon on Sunday, April 27, 2025, from 10 AM – 1 PM Central in Coralville, IA. All Midwest 1 Region members and families are welcome. Connect and chat with others from your region. Lunch will be served.
Registration is required and will close on April 12th. Please register HERE.
If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a Northwest Region Zoom Chat - May 8, 2025
2025-05-08 18:00 - 19:00 (America/Denver)
Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Join Region Leads Scarlett P. and Hayley T. for a Zoom Chat on May 8th at 6 PM Pacific/9 PM Eastern. This is a great opportunity to meet your newest Region Lead, Scarlett, and catch up with fellow members from your region. We’d love to see you there!

Registration is required. 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 an In-Person Southeast Region Meeting - May 10, 2025
2025-05-10 10:30 - 13:30 (America/Chicago)
Do you live in Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, or Tennessee?

Join us in Nashville, TN!

Southeast Region Leads, Blynda K., Scott G., and Tess O., have planned a lunch get-together on May 10, 2025, 10:30 AM-1:30 PM Central. 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 and will close on April 26th, 2025. Please register HERE.

If you have any questions, please reach out to Cindy@SoftBones.org.

3rd Annual Denim and Diamonds Fundraiser - REGISTRATION IS NOW OPEN
2025-05-17 17:30 - 21:30 (America/New_York) | Harvest Hall at Alstede Farms, 100 Rte 24, Chester, 07930, United States
Registration for the 3rd Annual Denim and Diamonds is now open!

Get your cowboy boots and dance for a great cause.

There will be:
🤠Live music by Glenn Roberts Cranked Up Country Band
🍖 BBQ spread by Famous Dave’s
🍸 Beer, wine, and specialty cocktails included
💎Silent Auction
🔥S’mores and campfire (weather permitting)
🤩Sponsorship opportunities to get your business out there

Date: Saturday, May 17, 2025
Location: Alstede Farms, 100 Rte 24, Chester, NJ 07930
Time: 5:30 PM – 9:30 PM

Register HERE.

Can’t attend but still want to donate to Soft Bones? Donate an auctionable item. Contact Jessica at Jessica@softbones.org for more information.

HPP AND ME Live Zoom Chat - May 20, 2025
2025-05-20 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on May 20, 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.
