Indiana In-Person Cannonball 5K Run, Roll, or Stroll Meet-Up
2024-10-19 14:00 - 16:00 (America/New_York) | Hargan-Matthews Park, 101 E Vaughn Dr., Madison, 47250, United States
We are calling all HPP members near Indiana.

Join region lead Cindy R. for an in-person Cannonball 5K in Historic Downtown Madison, Indiana. Meet us outside the entrance of Hargan-Matthews Park on October 19th at 2 PM Eastern. Walk, run, or stroll through the beautiful riverfront and main strip through historic downtown. We may even stop for ice cream!

Location:
Hargan-Matthews Park
101 E Vaughn Dr, Madison, IN 47250

Sign up here to participate in the Cannonball 5K. Make sure to join the “Indiana In-Person” group when you register.

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Share with your friends and family to let them know you are doing this challenge. Visit our Cannonball 5K page to learn how you and others can participate and support us!

The Cannonball 5K is sponsored in part by Alexion, AstraZeneca Rare Disease

Behind the Mystery of Hypophosphatasia
2024-10-21 07:30 - 08:30, 2024-10-29 07:30 - 08:30 (America/New_York) | Online
We are excited to share that our very own Deborah Fowler and Cindy Reasor will be featured on “Behind the Mystery of Hypophosphatasia”.

Behind the Mystery™ is a TV series dedicated to raising awareness about rare and genetic diseases through patient storytelling. Hear from four guests as they discuss HPP.

This episode will be aired on Lifetime on Monday, October 21th and Tuesday, October 29th at 7:30 AM ET.

It will also available on demand on The Balancing Act website or The Balancing Act YouTube Channel.

Join Us for an In-Person Northeast Region Meeting
2024-10-26 10:00 - 14:00 (America/Halifax) | Soft Bones Headquarters, 1719 NJ-10, Parsippany, 07054, United States
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Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris & Chris Denune for a Northeast Region meeting from 10 AM–2 PM. Our guest speaker is Dr. Nickolas Tyris from NJ. A OneSource Case Manager will be in attendance. Attendees will have the opportunity to connect with others and ask questions. Lunch will be provided. We hope to see you there! View the agenda.

The deadline to register has passed. Please contact Judith@SoftBones.org or Cindy@SoftBones.org for further assistance.

Location: Green Room Communications Office
1719 NJ-10, Suite #318
Parsippany, NJ 07054

We recommend parking in the South lot.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease, and the OSAIC Foundation.

Following the meeting, attendees will have the option to participate in the Cannonball 5K Run, Roll, and Stroll. Join the Northeast Group when you sign up! Please register HERE.

Northeast Region In-Person Cannonball 5K Run, Roll, or Stroll Meet-Up
2024-10-26 13:00 - 14:00 (America/Halifax) | 9-11 Memorial Trail Parking, 11 Tabor Road, Morris Plains, NJ, 07950, United States
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris & Chris Denune and fellow region memebers for a Cannonball 5K Run, Roll, or Stroll! Following our region meeting, attendees will have the option to participate in this annual event. We challenge you to complete a 5K. Together we can take many steps to raise awareness and vital funds for HPP.

Sign up here. Make sure to join the “Soft Bones Northeast” group when you register.

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Share with your friends and family to let them know you are doing this challenge. Visit our Cannonball 5K page to learn how you and others can participate and support us!

Location: 9-11 Memorial Trail Parking
11 Tabor Road, Morris Plains, NJ 07950

The Cannonball 5K is sponsored in part by Alexion, AstraZeneca Rare Disease

"The Psychological Impact of Living With HPP" Free Webinar
2024-10-29 19:00 - 21:00 (Asia/Kolkata) | Online
Join the Canadian Consortium for Children’s Bone Health (CCCBH) for a webinar on October 29, 2024, from 7:00 PM – 9:00 PM Eastern.

This webinar will feature Dr. Natalie Truba, a Pediatric Psychologist, Psychology, and Neuropsychology at Nationwide Children’s Hospital, Columbus, Ohio, entitled “The Psychological Impact of Living With HPP”. Following the meeting, stay for an “Ask Me Anything” session with medical experts, and a virtual “Catch-Up Over Coffee” with the HPP Community

This is a free online webinar but registration is required. Please register HERE.

This is part of the 2024 CARDS Virtual Series in partnership with Soft Bones Canada.

STRENSIQ Perspectives
2024-10-30 19:00 - 21:00 (Asia/Kolkata) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on October 30th 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 at STRENSIQ.com/events

World HPP Day Zoom Open House and Halloween Costume Contest
2024-10-30 20:30 - 22:30 (America/New_York) | Online
You’re invited to our World HPP Day Zoom Open House and Halloween Costume Contest!

Join Cindy R. and Sue K. on October 30th from 8:30 PM – 10:30 PM Eastern for a spooktacular night of chats, costumes, and camaraderie!

🎃 Come and go as you like.
🎃 Costume contest for both adults and children.
🎃 Come learn more about Soft Bones myHPP app.

Registration is required. Please register below.

Together we can celebrate World HPP Day!

Join Us for an In-Person Northwest Region Meeting
2024-11-02 10:00 - 14:00 (America/Los_Angeles) | Starbucks – Palisades Plaza, 1410 E Roseville Pkwy, Roseville, CA, 95661
Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Please join region lead, Haley T. on November 2nd at 10 AM Pacific Time for an in-person meetup. Grab a cup of coffee and chat with members from your region. Refreshments will be provided. We hope to see you there!

Location:
Starbucks – Palisades Plaza
1410 E Roseville Pkwy, Roseville, CA 95661

Registration is required. The deadline to register is October 26th. Please sign up HERE.

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

Appy Hour
2024-11-13 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 November 13, 2024, 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.

Teen Advisory Council Event - What is Advocacy and Why is it Important?
2024-11-19 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) teens!

Please join us on November 19th at 8 PM for an exciting presentation by patient and advocate Matt Hay from Alexion. During this meeting, learn what advocacy is and why it is important. Don’t miss this opportunity! TAC members, please check your emails to reserve your spot.

Matt Hay was a college student when diagnosed with a rare disease called Neurofibromatosis Type 2 (NF2) that would eventually take his hearing, balance, and facial movement. He turned his decades of struggle into an opportunity to help others live better lives.

Matt is a best-selling author, TEDx speaker, congressional lobbyist, public health doctoral candidate, an Ironman Triathlon and Boston Marathon finisher, and serves as the US Director of Advocacy for a rare disease biopharma company. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) and their three children.

Interested in joining TAC? Please contact us HERE for more information. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-11-21 14:00 - 15:00 (America/New_York) | Online
Register for your spot today!

Join us on November 21st 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.

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.
