Soft Bones

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.

Midwest 2 Region Patient Meeting
2023-10-21 12:00 - 14:00 (America/New_York) | Lake Iola- Interurban Shelter, William H. Graham Park at N. Bond St., Scottsburg, IN 47170
Region Lead, Cindy Reasor, will host a Midwest 1 get-together on Saturday, October 21st, 2023 from 12-2PM at Lake Iola- Interurban Shelter, William H. Graham Park at N. Bond St., Scottsburg, IN 47170. Lunch will be served. All Midwest 1 region members and families are welcome.
After the get-together all those who want to participate can join us for a Cannonball 5k Run, Roll, Stroll on the walking path around the lake from around 2-4PM. Water and Gatorade will be on hand. Coffee and warm cider and doughnuts to be served at the conclusion.
This portion of the region meetup is open to the public as well- so invite friends and family- we will all meetup at 2PM at the Lake Iola- Interurban Shelter, William H. Graham Park! Separate registration is required to participate in the Cannonball 5k Run, Roll, Stroll.

Registration is required and will close on October 13th, 2023.
Date: Saturday, October 21st, 2023
Time: 12PM to 4PM
Address: Lake Iola- Interurban Shelter, William H. Graham Park at N. Bond St., Scottsburg, IN 47170
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!

Unmask HPP Webinar: Tips for Traveling with your Medication
2023-10-18 21:30 - 22:30 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Leila Chaychi, MD, Endocrinologist
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 Tips for Traveling with your Medication.
Presented by Alexion AstraZeneca Rare Disease.

HPP AND ME Zoom Tutorial
2023-10-17 13:00 - 14:00 (America/New_York) | Online
Soft Bones will be hosting a HPP AND ME Zoom tutorial on Tuesday, October 17th, at 1:00 p.m. 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.

Unmask HPP Educational Event: Does Hypophosphatasia(HPP) Play A Role In Your Life?
2023-10-14 13:00 - 14:00 UTC | McCormick & Schmick’s, 711 Eastern Avenue, Baltimore, MD, 21202, United States
Register Today For This Informative In Person Event.
Presenter: Eduardo Luna, MD 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.

Southwest Region Virtual Chat
2023-10-13 20:00 - 21:00 (America/Los_Angeles)
Join Southwest Region Lead, Sue Krug via Zoom for an evening of conversation and friendship as we share stories and experiences with HPP.

All Southwest region members are welcome to attend.
Register now with this link!

Region Lead Bi-Monthly Call
2023-10-12 19:00 - 20:00 (America/New_York) | Online
FOR SOFT BONES REGION LEADS ONLY: Join the Region Lead bi- monthly call on Thursday October 12th from 7-8 pm EST.
For questions reach out to info@softbones.org

Soft Bones 15th Annual Golf Classic 2023
2023-10-02 | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Golf for a great cause! Join Soft Bones at the beautiful Somerset Hills Country Club in Bernardsville, NJ for the 15th Annual Golf Classic to support hypophosphatasia. Register now with the link below!

2023 Cannonball 5k Run, Roll, or Stroll
2023-10-01 00:00 - 2023-10-31 23:59 (America/New_York) | Online
It’s time to Run, Roll or Stroll!
Registration for Soft Bones second annual Cannonball 5k Run, Roll or Stroll is open NOW!
Register with the link in our bio and participate in a 5k local to you or virtually.
The 5k goes for the entire month of October!

Midwest 2 Region Patient Meeting
2023-09-30 15:00 - 16:00 (America/New_York) | Starbucks – Pavilion Shopping Center, 2692 Madison Rd. Rockwood, Cincinnati, OH
Region Lead, Cindy Reasor, will host a Midwest 2 get-together on September 30, 2023 immediately following the Unmask HPP event at approximately 3pm EDT at Starbucks, Pavilion Shopping Center, 2692 Madison Road Rockwood, Cincinnati, OH 45208. All region members are welcome to attend regardless of whether they attend the Unmask HPP event or not.
Registration is required and will close September 28, 2023.

Date: Saturday, September 30th, 2023
Time: approximately 3:00PM to 4:00PM
Address: Starbucks, Pavilion Shopping Center, 2692 Madison Road Rockwood, Cincinnati, OH 45208
RSVP By: September 28st, 2023
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!

Unmask HPP In-Person: Does Hypophosphatasia (HPP) Play A Role In Your Life?
2023-09-30 13:00 - 14:00 (America/Denver) | Season’s 52, 3819 Edwards Rd, Cincinatti, OH, 45209, United States
Register Today For This Informative Webinar.
Presenter: Eduardo Luna, MD 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 hypophosphatasia plays a role in your life.
This event is in-person, in Cincinnati,OH.
Presented by Alexion AstraZeneca Rare Disease.
Click the link below to register.

Northeast Region Patient Meeting
2023-09-23 15:00 - 16:00 (America/New_York) | Honey Joe’s Cafe, 5 Broad St Unit 2B, Stamford, CT 06901
Northeast Region Lead, Judith Harris, will host a Northeast Region get-together on September 23, 2023 immediately following the Unmask HPP event at approximately 3pm EDT at Honey Joe’s Café located at 5 Broad St Unit 2B, Stamford, CT 06901. Refreshments will be served.

All region members are welcome to attend regardless of whether they attend the Unmask HPP event or not.

OneSource Case Manager for the Northeast Region, Diana Miller, will be attending.

Registration is required and will close on September 21, 2023.
Date: Saturday, September 23rd, 2023
Time: approximately 3:00PM to 4:00PM
Address: Honey Joe’s Café located at 5 Broad St Unit 2B, Stamford, CT 06901
RSVP By: September 21st, 2023
If you have any questions, please reach out to judith@softbones.org or cindy@softbones.org
Sponsored in part by Alexion, AstraZeneca Rare Disease.
Register now with this link!

Unmask HPP In-Person: Does Hypophosphatasia (HPP) Play A Role In Your Life?
2023-09-23 13:00 - 14:00 UTC | Divina Modern Italian, 275 Summer Street, Stamford, CT, 06901, United States
Register Today For This Informative Webinar.
Presenter: Eric Rush, MD, FAAP, FACMG, CCD
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 hypophosphatasia plays a role in your life.
This event is in-person, in Stamford, CT.
Presented by Alexion AstraZeneca Rare Disease.
Click the link below to register.

Unmask HPP Webinar: Genetics And HPP
2023-09-19 18:30 - 19:30 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Chad Deal, MD Rheumatologist
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 genetics and HPP.
Presented by Alexion AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2023-09-19 13:00 - 14:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on Tuesday, September 19th, 2023 at 1:00 p.m. EDT. Meet the faces behind the names, talk about HPP or just life in general, and connect with others! Click the link below to join the call.

HPP AND ME Zoom Tutorial
2023-08-30 13:00 - 14:00 (America/New_York) | Online
Soft Bones will be hosting a HPP AND ME Zoom tutorial on Wednesday, August 30th, at 1:00 p.m. EDT. Learn more about the HPP community, connect with others and learn how to navigate HPP AND ME! Click the link below to join the call.

HPP AND ME Live Zoom Chat
2023-08-29 20:00 - 21:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on Tuesday, August 29th, 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! Click the link below to join the call.

Denim & Diamonds
2023-08-25 17:30 - 21:30 (America/New_York) | Harvest Hall, Chester, NJ, 100 Rte 24, Chester, NJ, 07930, United States
NEW DATE for Soft Bones Denim & Diamonds event now happening on August 25th, 2023 from 5:30 p.m.- 9:30 p.m.
Join us for a fun night of dancing, live music, food, drinks, auction items and more!
Register with the link below and we’ll see you there! Yee Haw!

Unmask HPP Webinar: Life's Changes And The Support You Have Along The Way
2023-08-22 18:30 - 19:30 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Miladys Palau-Collazo, MD, Pediatric 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 tips for traveling with your medication.
Presented by Alexion AstraZeneca Rare Disease.
