Teen Advisory Council (TAC)
Join the Teen Movement to Spread HPP Awareness.
What is TAC?
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 HPP?
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.
The mission of the TAC is to provide support and advocate for teens living with HPP. The council aims to provide a platform for teenagers to speak up about HPP, become involved in advocacy and fundraising, and manage content for the younger HPP community.
Living with the disease can impact many aspects of one’s life. It can be tough to find support and understanding from those who cannot relate to having the disease. The TAC provides an opportunity for teens to connect and share their individual experiences.
We empower teens to raise their voices about a rare disease that often does not get enough attention. Teens who have first-hand experience either living with HPP or being a friend or family member of someone with HPP are in the best position to advocate for the disease. Teens can reach out directly to local politicians to ask for support, or fundraise and spread awareness within their schools and communities.
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.
Do you or someone you love have hypophosphatasia? Do you want to connect with other teens going through similar experiences, raise awareness, or compete in fun challenges to win prizes?
Apply now to be part of the team!