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.
Rare Disease Day- One Month Away!
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…
Show Your Stripes – HPP Chat
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,…
STRENSIQ Perspectives – March 11, 2025
OnlineGain a new perspective on treatment! Join Alexion, AstraZeneca on March 11th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will…
New Patient Orientation Meeting – April 14, 2025
OnlineCalling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on April 14th at 8 PM…
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 Soft Bones National Patient Meeting – Registration is Now Closed
Great Wolf Lodge (Williamsburg, VA) 549 E Rochambeau Dr, Williamsburg, VA, United StatesRegistration is now closed for the 2025 Soft Bones National Patient Meeting on July 18th - 19th in Williamsburg, VA. Please contact Patient@SoftBones.org to be…
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.
