TALKING ABOUT HYPOPHOSPHATASIA is a comic book which explains hypophosphatasia in a clear, colorful and attractive and kid-friendly way. It is a great way to explain the disease to kids.
Educate. Empower. Connect. Soft Bones Foundation was formed in 2009 to provide information and a community to educate, empower and connect patients living with hypophosphatasia (HPP), their families and caregivers.
HPP is a condition that affects healthy development of bones and teeth, making bones softer and more likely to fracture. People who have HPP have trouble making an enzyme called alkaline phosphatase, or ALP. Without this important ALP enzyme, certain chemicals build-up and prevent calcium and phosphorus from binding together and depositing in the bones. As a result, bones can become soft, curved and fragile, and teeth may become loose or fall out prematurely.
For more information about HPP, including frequently asked questions (FAQs) on symptoms, research and treatment options, please spend time on our website today. If you'd like to connect with someone else living with HPP, or if you are a family member or friend of someone with HPP and want to share your experiences, please visit our forums. We want to hear from you, and so do others who are touched by this rare condition!
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Soft Bones is a member