Soft Bones

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.

HPP TeleECHO: HPP Genetic Nosology and Clinical Relevance
2023-02-08 12:00 - 13:00 (America/New_York) | Online
Join our HPP TeleECHO: HPP TeleECHO: HPP Genetic Nosology and Clinical Relevance on February 8th at 12PM EST, presented by Eric Rush, MD.
For more information, contact us at ECHO@SoftBones.org or (866)- 827- 9937.

HPP TeleECHO: Eye Findings in Hypophosphatasia
2023-01-13 12:00 - 13:00 (America/New_York) | Online
Join our HPP TeleECHO: Eye Findings in Hypophosphatasia on January 13th, 2023 at 12PM EST, presented by Mark S. Rollo, O.D.Dr.
For more information, contact us at ECHO@SoftBones.org or (866)- 827- 9937.

HPP TeleECHO: Vitamin B6 Status in Hypophosphatasia
2022-12-09 12:00 - 13:00 (America/New_York) | Online
Join our HPP TeleECHO: Vitamin B6 Status in Hypophosphatsia on December 9th at 12PM EST, presented by Dr. Michael P. Whyte, MD.
For more information, contact us at ECHO@SoftBones.org or (866)- 827- 9937.

Botox, Brunch & Bubbly
2022-11-20 11:00 - 15:00 (America/New_York) | Enriched Aesthetics, 1098 Mt Kemble Ave, Morristown, NJ, 07960, United States
Bring a friend or two and join us for a Botox, Brunch, and Bubbly party on November 20th from 11AM – 3PM at Enriched Aesthetics in Morristown, NJ. The fundraiser benefits Soft Bones, Inc. Enriched Aesthetics strives to provide an enriching experience, which will enhance and compliment your natural beauty, inspiring you to become the best version of yourself. Registration is required.

Date: Sunday, November 20th, 2022
Time: 11:00 AM – 3:00 PM

Register here by November 15th to get your Botox at the reduced rate of $10/unit (regular price $17/unit).

Proceeds benefit Soft Bones, Inc.: The US Hypophosphatasia Foundation, to support research for a cure and families living with HPP in the United States.

HPP TeleECHO: Hypercalcemia in HPP
2022-11-11 12:00 - 13:00 (America/New_York) | Phoenix, AZ

Unmask HPP Webinar: Tips for Traveling with your Medication
2022-11-10 21:00 - 22:00 (America/New_York) | Phoenix, AZ
Register Today For This Informative Webinar.
Presenter: Lynn Kohlmeier, 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 Tips for Traveling with your Medicine.
Presented by Alexion AstraZeneca Rare Disease.

World HPP Day
2022-10-30 00:00 - 23:59 (America/New_York) | Phoenix, AZ
This year’s theme for World HPP Day is HPP ON THE MOVE – a celebration of movement both physically and metaphorically.
Whether you choose to get moving by participating in the Cannonball 5k or another form of physical activity – or you start your own movement by educating others – the goal is to create momentum around awareness of hypophosphatasia around the world.
Visit the World HPP Day page to learn about ways you can join the movement.
Let’s Move!

Southeast Region Meet Up
2022-10-22 11:00 - 15:00 (America/New_York)
Join Region Lead Kirsten Mitchell and Blynda Kellner for a conversation as we share stories about living with or caring for someone with HPP. We will have a speaker who will talk about holistic health for those with HPP as well as OneSource Case Manager Dori Conwaywho will provide an overview of the OneSource program.
Click here to view the agenda and register
Sponsored in part by Alexion, AstraZeneca Rare Disease.

Unmask HPP Webinar: Tips for Talking to you HCP
2022-10-20 18:30 - 19:30 (America/New_York) | Phoenix, AZ
Register Today For This Informative Webinar.
Presenter: Steven Petak, 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 Tips for Talking to you HCP.
Presented by Alexion AstraZeneca Rare Disease.

HPP TeleECHO: Gene Therapy for HPP
2022-10-14 12:00 - 13:00 (America/New_York) | Phoenix, AZ
Virtual educational program for clinicians and researchers.
Presented by: Jose Luis Millan, PhD
Reach out to ECHO@SoftBones.org to get more information and to register. To view the full ECHO schedule click here.

Unmask HPP LIVE in Wisconsin- Does Hypophosphatasia (HPP) Play a Role in Your Life?
2022-10-08 11:00 (America/New_York) | Maggiano’s Little Italy 25500 N. Mayfair Road Wauwatosa, WI 53226, 25500 N. Mayfair Road Wauwatosa, WI 53226, Wauwatosa, WI, 53226, United States
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!
Presented by Alexion AstraZeneca Rare Disease.

Cannonball 5K Run, Roll, or Stroll
2022-10-01 - 2022-10-31 | Phoenix, AZ
Join us as we come together as an HPP community to raise global awareness of hypophosphatasia.
World HPP Day is our chance as a community to spread awareness for this rare metabolic bone disease and bring everyone together. From patients living with HPP, to caregivers, families, loved ones, researchers and doctors, everyone can get involved! We are stronger together, and when we move, we move as one! There is no correct form of movement, so let’s see you run, roll or stroll!
Click here to learn more and register

Unmask HPP Webinar: Tips For Traveling With Your Medication
2022-05-19 18:00 - 19:00 (Asia/Kolkata) | Phoenix, AZ
Register Today For This Informative Webinar.
Presenter: Susan Hughes, MS, CGC, Genetic Counselor.
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!
Presented by Alexion Astra Zeneca Rare Disease.

Unmask HPP Webinar: Caring For Someone With HPP
2022-04-30 00:00 - 17:00 (Asia/Karachi)
Register Today For This Informative Webinar
4/30/22 12:00 PM ET
Presenter: Bradley Van Sickle, MD, PhD, Pediatric Endocrinologist
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!
Presented by Alexion Astra Zeneca Rare Disease.
