Soft Bones

Appy Hour
2024-07-30 20:00 - 21:00 (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 a valuable partner in research for better HPP treatment and care.

Come join us on July 30th at 8 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. Join us in taking actionable 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.

Northwest Region Zoom Meeting and Chat
2024-07-25 19:00 - 20:00 (America/Los_Angeles) | Online
Do you live in Alaska, Idaho, Northern California, Montana, Oregon or Washington?

Join Region Leads, Hayley Thornton and Ann Haak on July 25th at 7:00PM Pacific. All who register and attend will be in a drawing for a $20 Starbucks gift card. Come meet your newest Region Lead, Hayley and connect with others in your region.

Registration is required. Please register HERE:

If you have any questions, please reach out to Hayley Thornton (HaleyT@SoftBones.org), Ann Haak (Ann@SoftBones.org) or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-07-25 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!

Join us on July 25th at 3 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.

Appy Hour
2024-07-24 15:00 - 16:00 (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 a valuable partner in research for better HPP treatment and care.

Come join us on July 24th at 3 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. Join us in taking actionable 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.

Central Region Meeting
2024-07-21 13:30 - 16:30 (America/Chicago) | Sump Memorial Library, 222 N Jefferson St., Papillion, NE, 68046, United States
Central Region Meet-Up Opportunity
Do you live in Arkansas, Colorado, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, Wyoming?

Join Soft Bones’s Region Lead, Kara Schweiss, for a Central Region Meeting on Sunday, July 21, 2024 at Sump Memorial Library. From 1:30 – 4:30 PM, connect with other members from your region. Lunch will be provided. All Central Region members and families are welcome to come to this local get-together. This is a time to connect and meet your local support system.

Date: Sunday, July 21, 2024
Time: 1:30 PM – 4:30 PM Central
Address: Sump Memorial Library (South Meeting Room)
222 N Jefferson St, Papillion, NE

Registration is required and will close on July 17, 2024. Register HERE.

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

Appy Hour
2024-07-18 20:00 - 21:00 (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 a valuable partner in research for better HPP treatment and care.

Come join us on July 18th at 8 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. Join us in taking actionable steps to transform healthcare. Download the app today in the Apple Store or Google Play Store.

Registration is required. Please register here.

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

Northwest Region Meeting
2024-07-13 10:00 - 12:00 (America/Anchorage) | Kaladi Brothers Coffee, 6901 E Tudor Rd, Anchorage, AK, 99507, United States
Northwest Region Meet-Up Opportunity
Do you live in Alaska, Idaho, Northern California, Montana, Oregon or Washington?

Join Region Lead, Ann Haak, on Saturday, July 13th in Anchorage, Alaska. Time and location will be announced soon. Come meet and connect with other members from your region. A OneSource Case Manager will be available to answer questions and provide support.

Date: Saturday July 13, 2024
Time: 10 AM Alaskan Time Zone
Address: 6901 E Tudor Rd, Anchorage, AK 99507

Registration is required. The deadline to register is Wednesday, July 10, 2024. Please register HERE.
If you have any questions, please reach out to Ann@SoftBones.org or Cindy@SoftBones.org.
This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

2024 Soft Bones National Patient Meeting
2024-07-12 17:30 - 2024-07-13 17:00 (America/New_York) | Great Wolf Lodge, Mason Ohio, 2501 Great Wolf Dr, Mason, OH, 45040, United States
Join us for our 2024 Soft Bones National Patient Meeting on July 12th–July 13th, 2024, in Mason, OH. This important event will bring together HPP community members to gain valuable knowledge while connecting with others. There is no cost to attend the meeting.

Meeting Venue
Great Wolf Lodge in Mason, OH
Address: 2501 Great Wolf Dr, Mason, OH 45040
Phone: 800-913-9653

Travel Grant Reimbursement Information
Soft Bones offers a limited number of travel grant reimbursements for those who need to subsidize the cost of transportation to the meeting. Refer to the travel grant policy for details. Please note that the foundation is a 501c3 nonprofit organization that funds events, such as this through ongoing fundraising efforts. When requesting a travel grant, you use your best judgment so the funds can be dispersed based on need. Donations in any amount to help are appreciated.
Be sure to answer the question regarding a travel grant during registration to indicate interest. Reimbursements are available for U.S. residents.

Contact Us
Registration is required and will close on July 1, 2024. Currently, there is a waitlist. If you are interested, please get in touch with us at patientmeeting@softbones.org.

Brought to you in part by:

Headline Sponsor

Star Sponsor

Community Builder Sponsors

Midwest 2 Region Zoom Meeting and Chat
2024-06-27 19:00 - 20:00 (America/New_York) | Online
Do you live in Kentucky, Michigan, Ohio, or West Virginia?
Join Region Leads Sharon Talkington and Nichole Macknight for a virtual Zoom Meeting on June 27th at 7 PM Eastern. This is open to all in the Region. As the National Patient Meeting is approaching, this is a great opportunity to connect with others who will be attending as well.

Registration is required. Sign up below:
https://us06web.zoom.us/meeting/register/tZwkc-mtqD8rGd06Nrcw_4sysAgk4WJJOJrh

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-06-20 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on June 20th at 8:00 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.

Midwest 1 Region Zoom Meeting and Chat
2024-06-12 20:00 - 21:00 (America/New_York) | Online
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?
Join Region Leads, Cindy Reasor and Nicole Belting, for a virtual Zoom Meeting on June 12th at 8 PM Eastern/7 PM Central. As the National Patient Meeting is approaching, this is your opportunity to connnect with others who will be attending. This is open to all in the Region even if you are not attending the NPM in Mason, OH.

Registration is required. Sign up below:
https://us06web.zoom.us/meeting/register/tZMtf-2upzgqHtOnC3y1jJWLaGaCRwCJWFP0

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Southwest Region Zoom Meeting and Chat
2024-06-09 19:00 - 20:00 (America/Chicago) | Online
Do you live in Arizona, Hawaii, Nevada, New Mexico, Southern California, or Utah?
Join Region Leads Amy Britt and Sue Krug for a Region Zoom Meeting/Chat on June 9, 2024, at 7 PM Mountain Time/6 PM Pacific Time. Connect and chat with local members about life and HPP. Registration is required. We hope to see you there!

Registration is required. Register below: https://us06web.zoom.us/meeting/register/tZIocuquqDkjHdcjnzSyPYHoLiDnBkBrA75U

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Denim & Diamonds - Registration Open
2024-05-18 17:30 - 21:30 (America/New_York) | Harvest Hall, Chester, NJ, 100 Rte 24, Chester, NJ, 07930, United States
Registration is now open! It’s time to put on your cowboy boots and dance for a great cause! Join us for the 2nd Annual Soft Bones Denim & Diamonds fundraiser on Saturday, May 18th, 2024, at Alstede Farms’ Harvest Hall, in Chester, NJ. There will be live music by Glenn Roberts’s Cranked Up Country Band, dancing, auction items, games, a campfire, and more!

Register for Denim and Diamonds below or pay at the door:
https://app.donorview.com/r3Rwk

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

HPP AND ME Live Zoom Chat
2024-05-16 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on May 16th at 1:00 PM 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.

Southeast Region Meeting/Chat
2024-04-23 19:00 - 21:00 (America/New_York)
Do you live in Alabama, Florida, Georgia, Mississippi North Carolina, South Carolina, or Tennessee?
Then, join Region Leads, Blynda Kellner and Scott Galvin for a Region Zoom Meeting/Chat on April 24, 2024, at 7 PM Eastern. This is an opportunity to meet the newest Region Lead, Scott while conversing with HPP members in the Region. Join in on the conversation!
Registration is required. Please register using the link here.

HPP AND ME Live Zoom Chat
2024-04-22 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

You are invited to our next HPP AND ME Zoom Chat on April 22, 2024, at 8 PM Eastern. Meet others within the HPP Community and connect. Come join the conversation!
Click here to register.

HPP AND ME Zoom Tutorial
2024-04-09 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!
Soft Bones will be hosting an HPP AND ME Zoom Tutorial on April 9, 2024, at 3 PM Eastern. Learn how to navigate our community forum and join the conversation. Registration is required. We hope to see you there!
Click here to register.

HPP AND ME Live Zoom Chat
2024-03-12 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join the HPP community in an HPP AND ME live chat on March 12, 2024, at 1:00 pm EST. Meet the faces behind the names, talk about HPP or just life in general, and connect with others! Registration is required. Click here to register.

South Central Region Patient Meeting
2024-03-02 10:00 - 14:00 (America/Chicago) | Texas A&M, College Station, TX
South Central Region Meet-Up Opportunity
Please join Region Leads Cami Rush and Cassandra Self for a South Central meeting on Saturday, March 2, 2024, from 10 AM–2 PM (CST) at Texas A&M University. Dr. Dana Gaddy and Dr. Larry Suva will present their research, followed by a field trip to see the sheep with HPP. Lunch will be provided. Registration is closed at this time.

Date: March 2, 2024
Time: 10 AM–2 PM (CST)
Address: Texas A&M University, College Station, TX
Note: The specific address and final agenda will be provided a few weeks before the meeting both on the registration page and confirmation email.

If you have any questions, please reach out to cindy@softbones.org
Sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-02-20 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join the HPP community in an HPP AND ME live chat on February 20, 2024, at 8 pm EST. Meet the faces behind the names, talk about HPP or just life in general, and connect with others! Registration is required. Click here to register.

Central Region Patient Meeting - Save the Date
2024-01-13 10:00 - 12:00 (America/Chicago) | Old School Bagel – Piedmont, 12000 Northwest Expy Suite A, Yukon, OK, 73099
Central Region Meet-Up Opportunity
Join Central Region Leads, Nellie Sanders and Casey Anne Johnson, as they warmly invite you to connect, come together, understand the challenges, and learn more about your local HPP support system!

Date: January 13, 2024
Time: 10:00 am – 12:00 pm Central Time
Address: Old School Bagel – Piedmont 12000 Northwest Expy Suite A, Yukon, OK 73099, USA (Note: the bagel store is located directly off the turnpike)
https://oldschoolbagel.com/locations?location=old-school-bagel-piedmont

Registration is required and will close on January 5, 2024

If you have any questions, please reach out to cindy@softbones.org
Sponsored in part by Alexion, AstraZeneca Rare Disease.
Register now with this link!

HPP AND ME Zoom Tutorial
2024-01-08 20:00 - 21:00 (America/Halifax) | Online
Register for your spot today!
Soft Bones will be hosting an HPP AND ME Zoom tutorial on January 8, 2024, at 8:00 pm EDT. Learn more about the HPP community, connect with others, and learn how to navigate HPP AND ME! Registration is required. Click here to register.

HPP AND ME Live Zoom Chat
2024-01-08 13:00 - 14:00 (America/Halifax) | Online
Register for your spot today!

Join the HPP community in an HPP AND ME live chat on January 8, 2024, at 1:00 p.m. EDT. Meet the faces behind the names, talk about HPP or just life in general, and connect with others! Registration is required. Click here to register.

Unmask HPP Webinar: Caring for Someone with HPP
2023-12-12 19:00 - 20:00 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Freda Hannafon, FNP-C, Endocrinology
Are you navigating an HPP (hypophosphatasia) diagnosis? Whether you’re new to HPP or a long-time patient or caregiver, there’s always more to learn about this disease. That’s why Alexion invited a medical professional/a physician and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about Caring for Someone with HPP.
Presented by Alexion AstraZeneca Rare Disease.

Unmask HPP Webinar: Living with HPP
2023-11-16 19:00 - 20:00 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Laura Cross, MS, CGC
Are you navigating an HPP (hypophosphatasia) diagnosis? Whether you’re new to HPP or a long-time patient or caregiver, there’s always more to learn about this disease. That’s why Alexion invited a medical professional/a physician and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about living with HPP.
Presented by Alexion AstraZeneca Rare Disease.

Northwest Region Patient Meeting
2023-11-09 12:00 - 14:00 (America/New_York) | Terun Pizzaria, 448 California Ave, Palo Alto, CA, 94306, United States
Join Soft Bones’ Denise Goodbar for a Northwest Region luncheon on Thursday, November 9th, 2023 from 12-2PM at Terun Pizzeria at 448 California Ave, Palo Alto, CA 94306. Lunch will be served. All Northwest region members and families are welcome.
Registration is required and will close on November 7th, 2023.
Date: Thursday, November 9th, 2023
Time: 12PM to 2PM
Address: Terun Pizzeria, 448 California Ave, Palo Alto, CA 94306
If you have any questions, please reach out to cindy@softbones.org

Sponsored in part by Alexion, AstraZeneca Rare Disease.
Register now with this link!

HPP AND ME Live Zoom Chat
2023-10-30 20:00 - 21:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on Monday, October 30th, 2023 at 8:00 p.m. EDT. Meet the faces behind the names, talk about HPP or just life in general, and connect with others! Registration is required. Click here to register.

World HPP Day
2023-10-30 08:00 - 23:59 (America/New_York) | Phoenix, AZ
This year we come together to make some noise about HPP! Let’s share our stories to raise awareness now and change the future of HPP.

2023 Cannonball 5k Run, Roll, or Stroll - Live in New Jersey
2023-10-22 13:00 - 2023-11-21 15:00 (America/New_York) | Giralda Farms, Madison, NJ
It’s time to Run, Roll or Stroll in person in New Jersey!
Looking for something to do on Sunday, October 22nd? Join us to walk or run a 5k while supporting Soft Bones We will meet at Giralda Farms in Madison, NJ near the St. Huberts entrance at 1:00 pm. Donuts and cider will be served. Proceeds benefit Soft Bones and patients living with hypophosphatasia.

Register here for Cannonball 5k and select team NJ Cannonballers.

Unmask HPP Educational Event: Does Hypophosphatasia(HPP) Play A Role In Your Life?
2023-10-21 13:00 - 14:00 (America/Los_Angeles) | Seasons 52, 2502 E Camelback Road Suite 140, Phoenix, AZ, 85016
Register Today For This Informative In Person Event.
Presenter: Aristides Maniatis, MD, FAA, Endocrinologist
Are you curious about life changes and the support you have along the way while navigating HPP? That’s why Alexion has invited a physician/specialist and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about how HPP plays a role in your life.
Presented by Alexion AstraZeneca Rare Disease.
