Calling all new and returning Region Leads for 2025.   Please join us on January 24th at 12 PM Eastern for a Region Lead Orientation.…

Calling all Teen Advisory Council (TAC) teens!  We are so excited to kick off our first Teen Advisory Council meeting of 2025 with a speaker!…

Soft Bones will host an HPP AND ME Zoom Tutorial on February 11, 2025, at 2 PM Eastern. Come learn the tips and tricks on…

Have you or a loved one been diagnosed with hypophosphatasia (HPP)? Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on…

We are one month away from Rare Disease Day! Rare disease affects 1 in 10 Americans. Did you know many great organizations are supporting those…

Come celebrate Rare Disease Day and Show Your Stripes with us at our Virtual Rare Disease Day HPP Zoom Chat! Join us on February 28,…

Gain a new perspective on treatment!   Join Alexion, AstraZeneca on March 11th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will…

Register for your spot today! Join us on March 25, 2025, EDT for an HPP AND ME Zoom Chat. Connect with others and share your experiences…

Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on April 14th at 8 PM…

Do you live in Alabama, Georgia, Florida, Mississippi, North Carolina, South Carolina, or Tennessee?   Join Region Leads Blynda K., Scott G., and Tess O.,…

Do you live in Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, or Tennessee? Join us in Nashville, TN! Southeast Region Leads, Blynda K., Scott…

Save the Date!   Join us for our 3rd Annual Soft Bones Denim and Diamonds fundraiser at Harvest Hall in Chester, NJ.   Date: Saturday,…