We are celebrating 15 years with our $15 for 15 campaign. Donate $15 – or in increments of $15 – to help us reach our goal of $3,000. Together we can!
Here are 5 ways $15 can make a difference:
- Cover a Welcome Packet for a newly diagnosed patient
- Fund a Hippo Squad Box to educate a child about HPP
- Fund a Stick It To HPP starter kit for children starting their self-injection journey
- Send a Take Care package to brighten someone’s day
- Underwrite expenses for a Region Meeting
Every $15 counts, together we can make a difference!
Our History
HPP Community Came Together on Yahoo
HPP patients first connected informally through a Yahoo Group, engaging in discussions about HPP and forming a US group.
2007Soft Bones Becomes an Official Non-Profit
Soft Bones, Inc. was established in 2008, but received its official designation as a 501(c)3 non-profit in 2009, dedicated to the community of patients, caregivers, and families living with hypophosphatasia. We celebrate it as the official founding year.
2009First National Patient Meeting
The first National Patient Meeting was held in San Diego, California. Since then, our meetings have grown to over 200 people!
2013Soft Bones Awards its First Research Grant
The first Annual Maher Family Research Grant was awarded to Steven Mumm, Ph.D. Since then, we have awarded over $500,000 in research grants to advance the understanding and treatment of HPP.
Learn More2014First HPP Treatment Approved
In October of 2015, Strensiq™ (asfotase alfa) becomes the first FDA-approved treatment for patients with Perinatal, Infantile and Juvenile Onset hypophosphatasia (HPP).
2015Official Mascot of HPP Announced
In 2016, the hippopotamus became Soft Bones' official mascot after a community wide vote. The word "hypophosphatasia" sounds a lot like hippopotamus. Plus, its ability to thrive on land and in water shows its versatility and resilience, just like the many patients living with HPP embody.
2016Region Lead Program Launched
Soft Bones rolls out Region/Region Lead program to provide localized support to a growing and geographically dispersed HPP community.
20181st Annual Global Scientific Meeting
Soft Bones hosted its 1st ever Global Scientific Meeting in Chicago, Illinois. It brought together 50 HPP experts from around the world to talk specifically about the latest findings in HPP.
June 2018Soft Bones Launches the myHPP App
The myHPP app goes live! It was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health while being a valuable partner in research for better HPP treatment and care.
Learn MoreJuly 2024Programs and Services
Discover more about our programs and services by clicking on the image below.
