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WORLD HPP DAY RESOURCES

Here are some ways that you can get involved with World HPP Day.

Scroll to the bottom of this page to download any of our social media images.

 

INSTAGRAM

  • Post an image with our customized World HPP Day  logo.

  • There are five major hashtag components that will be used to create awareness and engagement. They are #HPPTogether, #SoftBones, #HPPAware, #WorldHPPDay, and #Hypophosphatasia. When posting your awareness picture or pictures, we suggest using no more than three to four of the hashtags listed above.

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  • Post a photo on your feed wearing our World HPP Day t-shirt.  Our HPP Together t-shirts are now available for purchase. Due to timing for production and increased shipping delays as a result of COVID-19, please note that orders placed after October 19 may not arrive by World Hypophosphatasia Day, October 30.

  • Spread awareness through the “Fun”draiser StoryBoard: Post our World HPP Day StoryBoard to your Instagram story (download below). Your followers will be able to “purchase” one or more of the squares listed, and will donate the amount listed through Venmo while leaving a comment with their chosen squares. Once a donation is received, use the Instagram Story tools to mark off the squares that have been purchased bingo-style. 

  • If you have questions about the fundraiser StoryBoard, please email: sue@softbones.org.

FACEBOOK

  • Post an image of our customized logo or use the World HPP Frame. To use the Soft Bones Frame, follow these steps:

    •  Click on your Facebook profile image.

    • Select Update Profile Picture Select “Add Frame” tab at top.

    • In search box, type in Soft Bones World HPP Day. 

    • Select frame and position photo using the + - feature under the photo. 

    •  When finished, click “Use as profile picture” button at bottom left to save.

  • Post a photo on your feed wearing our World HPP Day t-shirt. 

  • Be sure to use the hashtags listed above in our Instagram section.

  • Change your cover photo to one of our HPP Together World HPP Day graphics (listed above). The customized World HPP Day Graphic will highlight the importance of engagement and being involved in advocacy. It will show your family, friends, and Facebook followers the strong community here at Soft Bones.

  • Host a Facebook Fundraiser - Create a Facebook fundraiser a few days prior to World HPP Day so that your followers will be able to donate to your cause. It’s quick and easy!

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TWITTER

TWITTER

  • Post an image of our customized logo.

  • Be sure to use the hashtags listed above in our Instagram section.

  • Post a photo on your feed wearing our World HPP Day t-shirt.  

  • Tweet about World HPP Day and encourage others to follow @SoftBonesHPP on twitter. Please re-share any content you see on the Soft Bones twitter account to increase awareness on World HPP Day.

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HPP TOGETHER OFFICIAL VIDEO

 

  • Seeking video submissions! Please help us spread awareness by participating in our "Together- We Are Stronger" World HPP Day video.

  • Our World HPP Day video will be highlighting two pivotal aspects: 

    • To reinforce to our community that Together -We Are Stronger. 

    • To reinforce and educate the public about the importance of engagement and patient advocacy.

  • The compilation video will be 2-3 minutes long, which will include short clips submitted by patients, family members, friends, doctors, etc. It will be shared through social media, as well as the Soft Bones website.

  • It only takes a few minutes to record your clip, and participants will be guided through the process using an easy-to-follow app that takes the guesswork out of the process. Filming will be lots of fun!

WELLNESS WEBINAR

 

  • Join us on World HPP Day, Oct. 30 at 2pm ET with Today Show correspondent Dr. Jen Hartstein (https://www.drjen.com). Dr. Jen is a nationally recognized child, adolescent and family psychologist based in New York City. She is a frequent contributor on NBC’s The Today Show and a core expert on The Dr. Oz Show. During this webinar, Dr. Jen will discuss how to manage emotional and mental health while living with a chronic disease. This webinar will include tools to cope during uncertain times, such as COVID-19, self-care strategies, such as journaling, and much more! 

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SOFT BONES HIPPO SQUAD

 

  • As a means of engaging children with HPP and their siblings, Soft Bones offers a membership group known as the Hippo Squad, where “cool” kids connect. The squad offers children living with this rare disease an opportunity to connect to a community of others just like them, while educating them on their disease through activity boxes mailed to their home throughout the year. To further demonstrate the theme of HPP Together, families are encouraged to learn more about this program and register their child(ren) by clicking the link below:

  • All registrants will receive a copy of the first storybook of its kind for children with HPP created by Soft Bones, “Journaling My Hypophosphatasia.”

 

OUR MISSION

The mission of Soft Bones, Inc. is to provide valuable information, education and support for people living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fund-raising efforts.

Downloadable Social Media Images

 

HPP FACTS

 

​We encourage you to download and share the following images to raise awareness for HPP.