Soft Bones Teen Advisory Council
Join The Teen Movement to Spread HPP Awareness
SOFT BONES TAC AT A GLANCE
TAC is a support and advocacy group for teen patients with HPP, siblings of those with HPP, or teens who have friends or other loved ones with HPP. Our program was created to bridge connections between teens with HPP and to provide a platform for teens to speak about HPP to the broader community.
WHAT IS HYPOPHOSPHATASIA?
Hypophosphatasia, or HPP, is a rare genetic disorder that affects the development of bones and teeth. The condition disrupts a process called mineralization, causing people with HPP to have weaker bones and often skeletal abnormalities. HPP is extremely rare, with severe cases affecting around 1/300,000 people and less severe cases affecting 1/6,730 people.
TAC MISSION
Our mission is three-fold:
First, we want to build a community of teens with HPP. Living with the disease can impact every aspect of one’s life - not only can the disease result in more frequent injuries or doctor’s appointments, but it can pose a hindrance to daily activities such as playing sports, completing homework assignments, or hanging out with friends. It can be tough sometimes to find support and understanding from those who can not relate to having the disease. That is why we created the TAC, for teens affected by HPP to connect and share their individual experiences.
Next, we want to empower teens to raise their voice about a rare disease that often does not get enough attention. Teens who have first-hand experience with HPP are in the best position to advocate for the disease. Rather than leave it to the adults, teens can directly reach out to local politicians to garner federal support, or fundraise and spread awareness within their schools and communities.
Last but certainly not least, we want the TAC to be an enjoyable and worthwhile experience. From writing blog posts, to communicating with local politicians, to participating in social media challenges, there are numerous ways for you to get involved and contribute your unique talents.
