HPP Community
Soft Bones amplifies the voice and the needs of the HPP community. It is our goal to empower, educate and connect with the goal of a cure.
Bone Zone
HPP AND ME
Read about HPP patients, their stories of diagnosis and living with the disease in our blog, Bone Zone.
You Can Make A Difference.
Photo Gallery
Read about HPP patients, their stories of diagnosis and living with the disease in our blog, Bone Zone.
Meet Me Monday
Come meet the Soft Bones’ staff members, Region Leads, moderators, and volunteers that make our mission a reality.
HPP AND ME Live Zoom Chat
OnlineRegister for your spot today! Join us on January 23, 2025, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others…
New Patient Orientation Meeting
OnlineCalling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation Meeting on January 23rd, 2025, at…
Region Lead Orientation – January 24
OnlineCalling all new and returning Region Leads for 2025. Please join us on January 24th at 12 PM Eastern for a Region Lead Orientation.…
Rare Disease Day- SAVE THE DATE
Save the Date! Let's celebrate Rare Disease Day on Friday, February 28, 2025! Materials coming soon...
3rd Annual Denim and Diamonds Fundraiser – SAVE THE DATE
Harvest Hall at Alstede Farms 100 Rte 24, Chester, United StatesSave the Date! Join us for our 3rd Annual Soft Bones Denim and Diamonds fundraiser at Harvest Hall in Chester, NJ. Date: Saturday,…
2025 National Patient Meeting – SAVE THE DATE
Great Wolf Lodge (Williamsburg, VA) 549 E Rochambeau Dr, Williamsburg, VA, United StatesSave the Date! Join us for the 2025 National Patient Meeting in Williamsburg, VA. This important event will bring together HPP community members to…
17th Annual Golf Classic and 2nd Annual Pickleball Tournament- SAVE THE DATE
Somerset Hills Country Club 180 Mine Mount Rd, Bernardsville, New JerseySave the Date! Join us for our largest fundraiser of the year on September 29th, 2025! Date: Monday, September 29th, 2025. Location: Somerset…
Calendar of Events
We are continually creating and updating resources and events to provide patients, caregivers and the medical community with the latest information about HPP.
