Soft Bones

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.

Midwest 1 Region Meeting
2023-08-13 13:00 (Asia/Kolkata) | Cincinnati, OH, Starbucks - Pavilion Shopping Center, 2692 Madison Rd. Rockwood, Cincinnati, OH
Join Region Lead Nicole B. for a conversation as stories about living and caring for someone with HPP are shared on Sunday, August 13, from 1:00 p.m.- 4:00 p.m. CST!

OneSource Case Manager, Krista Higgins, will also be in attendance to give an overview of the OneSource program. Refreshments will be served, and the address will be shared with you upon registration.

RSVP by August 6, 2023. The meeting is open to those residing in Illinois, Indiana, Iowa, Minnesota & Wisconsin. Contact Nicole B. for details or with any questions nicole@softbones.org. Register now with this link!

Region Lead Bi- Monthly Call
2023-08-10 19:00 - 20:00 (America/New_York) | Online
FOR SOFT BONES REGION LEADS ONLY: Join the Region Lead bi- monthly call on Thursday August 10th from 7-8 pm EST.
For questions reach out to info@softbones.org

HPP AND ME Live Zoom Chat
2023-07-18 13:00 - 14:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on Tuesday, July 18th, 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.

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2023-07-04 08:00 - 09:00 (America/New_York) | Online
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Unmask HPP Webinar: Tips For Traveling With Your Medication
2023-06-22 20:30 - 21:30 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Gnanagurudasan Prakasam, MD, Pediatric Endocrinology
Are you navigating an HPP 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 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.

HPP AND ME Live Zoom Chat
2023-06-15 20:00 - 21:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on June 8th, 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.

Region Lead Bi-Monthly Call
2023-06-08 19:00 - 20:00 (America/New_York) | Online
FOR SOFT BONES REGION LEADS ONLY: Join the Region Lead bi- monthly call on Thursday June 8th from 7-8 pm EST.
For questions reach out to info@softbones.org

2nd Soft Bones International Scientific Meeting 2023
2023-06-02 08:00 - 2023-06-04 17:00 (America/New_York) | Bethesda, MD, United States
Join Soft Bones at our 2023 Scientific Meeting on June 2-4, 2023.

Teen Advisory Council (TAC) Trivia Night
2023-05-23 19:00 - 20:30 (America/New_York) | Online
Join in the fun in our virtual Trivia Night Tuesday, May 23, 2023, from 7 pm to 8:30 pm EST. The Teen Advisory Council (TAC) invites you to show off your knowledge and win some great prizes. Please register before 12 pm EST on Tuesday, May 23, 2023! 🎲
Click the link below to register now. https://app.donorview.com/Event/EventInfo?prm=Fl1VJGyogmJ1FXnB77qRza1JgqsaSij_6zHcUS6WKT02OckMd5fAQJNFWPAaAg9R_w7NQrlffptMOja6fVv8Lug7-Qlv9yAPcO-vg3N1RzgGIogJggupZPpWZT4GAgkqhIQMG7I-7OZy3_w8BnYEgQjxfMsEiySqKpRLqqXPysDz0Nx7BWzhQP1oxRFVZ4uIu3a5x8ozyjgdP7UPPHl1eRHdvsrXiuSwEKK5WtBSMwBljnty48IYI5uD2xhEkmfH0

Unmask HPP Webinar: Living with HPP
2023-05-16 19:30 - 20:30 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Jacqui Kernaghan, PA- C, Preventative Medicine
Are you navigating an HPP 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 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 living with HPP.
Presented by Alexion AstraZeneca Rare Disease.

HPP AND ME Zoom Tutorial
2023-05-09 20:00 - 21:00 (America/New_York) | Online
Soft Bones will be hosting a HPP AND ME Zoom tutorial on Tuesday, May 9th, at 8:00 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
2023-05-04 15:00 - 16:00 (America/New_York) | Online
Join the HPP community in an HPP AND ME live chat on May 4, 2023, at 3:00 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.

Soft Bones Teen Advisory Council (TAC) Trivia Night
2023-04-21 19:00 - 20:30 (America/New_York) | Online
Join in the fun of our virtual Trivia Night, Friday April 21, 2023 7pm to 8:30pm EST. The Teen Advisory Council (TAC) invites you to show off your knowledge and win some great prizes. Please register before 12pm EST on Friday 21, 2023.

Unmask HPP Webinar: Genetics and HPP
2023-04-19 19:00 - 20:00 (America/New_York) | Online
Register Today For This Informative Webinar.
Presenter: Dmitriy Niyazov, MD
Are you navigating an HPP 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 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 Zoom Meeting
2023-04-12 20:00 - 21:00 (America/New_York) | Online
Join the HPP AND ME community members in a live chat via Zoom on Wednesday, April 12th, at 8:00 p.m. EDT! Come together and get to know one another, meet the faces behind the screen names, and talk about HPP!
You can register for the meeting with the link below. https://us06web.zoom.us/meeting/register/tZErdemtrjouHtYWuxpqbfgQx6XsHXVcDciB#/registration

HPP TeleECHO: ALPL Variant Database
2023-03-10 12:00 - 13:00 (America/New_York) | Online
Join our HPP TeleECHO: ALPL Variant Database on March 10th, at 12PM EST, presented by Dr. Wolfgang Hogler.

For more information, contact us at ECHO@SoftBones.org or (866)- 827- 9937.

HPP AND ME Tutorial #2
2023-03-01 19:00 - 20:00 (America/New_York) | Online
Join Soft Bones HPP AND ME community for a tutorial!
March 1, 2023
SESSION 2: (7:00 p.m.)

https://us06web.zoom.us/meeting/register/tZwof-ugqzoiHdygHj7Wi4DKOmB9PADf8Q5F

HPP AND ME Tutorial #1
2023-03-01 13:00 - 14:00 (America/New_York) | Online
Join Soft Bones HPP AND ME community for a tutorial!
March 1, 2023
SESSION 1: (1:00 p.m.)

https://us06web.zoom.us/meeting/register/tZUvfuyhqT4sHtVfikHsMID5seFKxt_6sPG5

Rare Disease Day 2023
2023-02-28 00:00 - 23:59 (America/New_York) | Online
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
SHARE YOUR COLOURS

National Patient Meeting 2023
2023-02-17 16:00 - 2023-02-18 17:00 (Asia/Kolkata) | Phoenix, Arizona
Join us for our 2023 National Patient Meeting happening on February 17-18 in Phoenix, Arizona!
This important event will bring the HPP community together to learn valuable information about hypophosphatasia from healthcare experts and peers. There is no cost to attend this meeting.
Click here to learn more and view the meeting agenda.
