Youth and Teens
Through an array of programs and services, Soft Bones fulfills its mission to support patients, families, physicians and other members of the HPP community. We have a number of programs specifically designed for youth and teens.
Soft Bones Hippo Squad
Ages: 3–12 years old
For Children with HPP, Children of Parents with HPP, and Siblings of Children with HPP
Teen Advisory Council (TAC)
Ages: 13–21 years old
Soft Bones’ Teen Advisory Council is a support and advocacy group made up of teens that either have HPP, are siblings or children of someone with HPP, or are friends of someone who has HPP. The council aims to provide a platform for teenagers to speak up about HPP, become more involved in advocacy and fundraising, and manage content for the younger HPP community. Learn more about the TAC.
Stick It To HPP!
Soft Bones’ Teen Advisory Council (TAC) has created a program that includes a self-injection starter kit to help children gain independence on their self-injection journey, and also create a safe and supported environment while they do so. The kit has helpful tips and fun activities along the way that are great for children and their families. Together let us “Stick it to HPP!” Please fill out the form below to inquire about the program. Mailings are available to U.S. residents only. Request a kit today!
Journaling My Hypophosphatasia Children’s Book
Soft Bones has worked to bring the first children’s book of its kind. ‘Journaling My Hypophosphatasia’, is written from the perspective of a young girl living with HPP, allowing children to relate to the character. The book features activities to help children express the ups and downs of living with a rare disease and become more educated about HPP. Mailings are available to U.S. residents only. Order yours today!
Take Care Package Program
Soft Bones offers a care package program, for U.S. residents, which provides a cheerful surprise to children undergoing surgery or other hospitalization to manage their HPP. Boxes may be automatically sent once a hospitalization is disclosed, or can be requested directly by contacting the foundation at Info@SoftBones.org.
Soft Bones Tooth Fairy Program
Losing a tooth can be an exciting milestone in a child’s life, but for HPP families, it can be a somewhat frightening event. Every tooth lost can be a tough reminder of the challenges of living with HPP, however, for a child– a lost tooth means one thing – the Tooth Fairy is coming! Soft Bones has created a special Tooth Fairy Pillow featuring our HPP mascot, the hippo, that children can use when they have lost a tooth. Our goal is to turn this potentially upsetting experience into a happy event for everyone. We also use this opportunity to provide HPP education focused on the dental implications of the disease. Mailings are available to U.S. residents only. Request a pillow!
