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  • ORGANIZATION PROFILE
  • SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION

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(40.90733,-74.42563)
 

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Mission Statement

The mission of Soft Bones, Inc. is to provide valuable information, education and support for people living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fundraising efforts.

Description

Founding:

Our founder's son was just 4 months old when she started to notice something was a little bit off. His wrists looked wide. He did not bear weight on his legs. He was not a strong sitter. Their pediatrician blamed it on low muscle tone and said this one "won’t be our athlete." But they could not let it go. What was causing the low muscle tone? Why did his wrists look like that?

That is when the obsessive research began. Our founder frantically scoured patient forums, read every possible website, emailed and chatted with patients, and conducted endless Google searches into all hours of the night.

At 18 months old, they finally had a diagnosis: hypophosphatasia (HPP). That was the one web search with results that left me breathless. Children diagnosed with HPP have a 50 percent chance of survival. Many go on to do quite well.

It was that single phrase that led us to start Soft Bones: The U.S. Hypophosphatasia Foundation. It was shocking to learn that there was no formal website with information on the condition. No place we could send friends and family who wanted to make a donation or learn more about HPP. Soft Bones was founded in 2009, after our founder's son was diagnosed with HPP, as a resource to help individuals and families to understand, manage, find proper care and promote adovcacy and research for this rare and potentially life-threatening disorder.

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