Soft Bones HPP

Friendly reminder! Join us tomorrow at 8:00 PM Eastern for an #HPPANDME Zoom Chat! Connect with others and share your HPP journey. Let’s come together and grow this incredible community! Registration is required. Join us below. ow.ly/fBO750YF7p1 #SoftBonesHPP

Join us for the South Central in-person Region Meeting on April 30th at 5 PM Central. Come ready to mingle, talk about HPP, and meet others living with HPP. We hope to see you there! 📅 Registration is required and closes April 27th. Register below: app.dvforms.net/api/dv/9vydye

There's still time to complete the In-Utero Enzyme Replacement Therapy survey on the myPP app. It only takes five minutes. This is your chance to directly influence research that could impact future generations of families living with HPP. Learn more: ow.ly/6c2C50YIaU7

Friendly reminder! Join us tomorrow at 1:00 PM Eastern for an #HPPANDME Zoom Chat. Meet the faces behind the names, talk about HPP or life in general, and connect with others! Registration is required. Join us below. ow.ly/LJeV50YF6KR #SoftBonesHPP #HPPCommunity

Calling all HPP members across the pond! Our next UK HPP AND ME Zoom chat, hosted by Ash F. and Meryl C., will take place on April 21st at 7 pm GMT. This is your chance to connect and ask questions. Don’t miss out! Register: ow.ly/mC6750YFO0s #SoftBonesHPP #HPPCommunity

🚨 Calling all Teen Advisory Council (TAC) members! Our next TAC meeting is on April 13th at 8 PM Eastern. Please check your email or text to let us know you’re in. See you soon! Interested in TAC? View eligibility below: ow.ly/95V450YGFYG #SoftBonesHPP #HPPCommunity

New Podcast Alert! What happens when a physical therapist becomes the patient? In this episode, Adam joins guest host Cindy Reasor and shares what it’s like to navigate HPP from both sides of care. Tune in below: ow.ly/kLW650YF0bW #SoftBonesHPP #HPPCommunity

Are you familiar with #HPPANDME? It is an online community forum that connects HPP patients and caregivers. Ask disease-specific questions and share experiences in a secure, welcoming environment. Join the conversation: ow.ly/giGx50YFbP9 #SoftbonesHPP #HPPCommunity

Friendly reminder to register for the Northwest In-Person Region Meeting. Catch up with your Region Leads and connect with others in your area. 📅 Registration is required and closes May 3rd. Be sure to reserve your spot below! ow.ly/Nl0750YCtXs #SoftBonesHPP

Spring into style with Soft Bones merch for you, your family, and your friends just in time for warmer weather. April deals are here! Every purchase supports Soft Bones and helps spread awareness every time you wear it! 🌸 Shop now! ow.ly/Kj5p50YEAFN #SoftBonesHPP

What do Soft Bones and March Madness have in common? @BillRaftery! Bill was our first guest on the Cannon Unbroken podcast and has been adding colorful commentary from the sidelines to this year’s NCAA men's postseason. 🎧 Tune in! ow.ly/Xcsw50YEGp7 #SoftBonesHPP

⏳ One week left to register! Join us on April 25 at 11 AM ET for our Northeast Region In-Person Meeting near Times Square. Meet others in the community and enjoy a casual lunch. 📅 Registration closes April 11. Secure your spot today! app.dvforms.net/api/dv/8l9lzr #SoftBonesHPP

The myHPP app was developed as a platform to transform patient care and accelerate #hypophosphatasia research. Since its launch, it has helped hundreds of users better understand their medical journey, all in one place. Let’s continue this momentum in 2026! #SoftBonesHPP

Emergency Scenario Prepareness Guide updated link: ow.ly/a32F50YCsqE

Spring brings sunshine, but it can also bring some of the year's most severe storms. Are you prepared? Get acquainted with some of our emergency resources: 📌 Emergency Scenario Preparedness Guide: ow.ly/z4ai50YBrrA 📌 Emergency Supply Checklist: ow.ly/rtw650YBrrz

At just one year old, Emma lost a tooth, root and all. This moment led to a life-changing diagnosis of hypophosphatasia. Now 8.5 years old and 1,000 injections later, Emma is showing the world what resilience looks like. Read her story: ow.ly/H5OV50YBpxJ #SoftBonesHPP

Make the most out of your NPM trip and take your Chattanooga experience to new heights, literally! Lookout Mountain offers breathtaking views, and the Incline Railway lets you enjoy the journey without the climb. Plus, make a pit stop at the iconic Rock City. #SoftBonesHPP

Last week, the Teen Advisory Council came together and brought their creativity for a fun and meaningful Art Night. Similar to how no two hippos look the same, HPP shows up differently in each person. Thank you to everyone who joined us. Learn more: ow.ly/Hv4x50YAKQ8

In like a lion, out like a lamb! Send March out in style with our “Baad to the Bones” design. From March 30–April 2, enjoy 30% off everything. It’s the perfect time to freshen up your wardrobe while supporting Soft Bones. Shop here: ow.ly/FyCb50YACVK #SoftBonesHPP

Today is #NationalDoctorsDay! A day to recognize the contributions of doctors in providing high-quality healthcare. Looking for an HPP-experience provider, or are you a doctor who treats HPP? Contact us to get connected. #SoftBonesHPP #HPPCommunity #RareDisease