World HPP Day 2025 – Soft Bones

Is There a HIPPO in the Room?

World HPP Day, on October 30th, is a time for the HPP community to come together and raise awareness about hypophosphatasia. Whether you’re living with HPP, a family member or friend, a caregiver, a researcher, or a healthcare professional, join us in fulfilling our mission.

This year, we celebrate the progress we’ve made but recognize how far we still have to go in understanding the impact of low alkaline phosphatase in the body. 1:200 people are estimated to be carriers of HPP and now we know that carriers can actually have symptoms of HPP. That means in the US alone, by these estimates, there could be as many as 1.6 million people who have an ALPL mutation! Across the world, if those numbers are accurate, that’s 40 million people globally! We may have soft bones, but our spirit to make a difference is stronger. We will not give up.

This means despite our efforts, HPP is still grossly underdiagnosed. The good news is that alkaline phosphatase testing is readily available in simple blood panels; however, low levels are being overlooked by health care professionals. Patients may present with symptoms, but unless they present with life-threatening forms of HPP, they are easily overlooked. There’s an elephant in the room – or in HPP we say a HIPPO in the room – that is not being addressed. We need the HIPPO to be seen. Instead, we have patients being misdiagnosed with other conditions such as osteoarthritis, osteoporosis, fibromyalgia, chronic fatigue syndrome and other conditions.

The more patients who are diagnosed with HPP, the more power we have as an HPP community. If those estimates are correct, HPP may not be as rare as we think.

Raising Awareness

There are many ways you can help us spread the word and ensure the HIPPO IN THE ROOM isn’t overlooked. Below you will find social media content, and suggestions for other ways for you to share your story. But the most important part is that we share that if you have low ALP, think HPP!

If you entered our Rare Disease Day Giveaway in February, be on the lookout for your hat or hippo in the mail. Once you receive your package, make sure to:

Take a photo or a few
Post on social media
Share your story
Tag us @SoftBonesHPP
Use hastags like #WorldHPPDay #hypophosphatasia #RareDisease
Comment, repost, and react to our posts leading up to World HPP Day!

Social Media Content

Soft Bones, Stronger Spirit

Download and print the "Soft Bones, Stronger Spirit" visual. Snap a photo with the poster and share it on social media.

Shareable landscape "Soft Bones, Stronger Spirit"

World HPP Day

Download and print the "World HPP Day" visual. Snap a photo with the poster and share it on social media.

Shareable landscape "World HPP Day"

I Love Someone With HPP

Download and print the "I Love Someone With HPP" visual. Take a photo with the poster and share it on social media.

Shareable landscape "I Love Someone With HPP"

Together We Can FB/X Cover Photo

Download and update your FB and X cover photo on social media.

Shareable FB/X Cover Photo World HPP Day Logo

Profile Pictures

Update your social media profile picture to raise HPP awareness! Circular Profile Picture: Right-click to ‘save image as’ to your computer, or hold for 2 seconds to ‘save photo’ to mobile device.
World HPP Day Profile Frame: Fill out the form on this page, and you will receive your photo in the profile frame via email, Share and promote our #HPP story.

Zoom/Google
Meet Background

Update your Zoom or Google Meet background to raise HPP awareness! Click on the image below. Right-click to ‘save image as’ to your computer, or hold for 2 seconds to ‘save photo’ to mobile device. Upload to any video session. Together we can share and promote our #HPP story.

Fact Cards

Share these fact cards on your social media account to raise awareness. Click on the image of choice. Right-click to ‘save image as’ to your computer, or hold for 2 seconds to ‘save photo’ to mobile device. Together we can share facts about this rare disease.

World HPP Day Ribbon

Download and post the World HPP Day ribbon to show your support! This Ribbon represents the many aspects of hypophosphatasia.

Host a Fundraiser &
Post it to Social Media

You can even start your very own fundraiser and share it on Instagram, Facebook, Tik Tok, etc. However you’d like to show your support for Soft Bones, you can do it! If you share on social media, tag Soft Bones so we can share with you and spread the word about HPP.