By Kids — For Kids
Why We’re Here
We are committed to our mission of youth-centered leadership development through service to the rare disease community.
By providing emotional support to pediatric patients and their families during life-changing and critical transitions, we help shape a healthier & more positive experience that ensures compliance with treatments as well as family unity.
Of patients diagnosed with a rare disease are children
Number of Americans with a rare disease
Of TAF Patients maintain treatment as prescribed by their physician
Keep up with TAF!
Our very own Susan Hagemeyer, #TAF board member, was featured in Toledo Parent! “Words Matter” discusses how the words we use matter when discussing disabilities and rare diseases. Here is an excerpt: “Susan Hagemeyer, an active board member of the Avalon Foundation...
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Learn more about who we are, what we do, and how we help
#KC4K Youth Leadership Program
Designed to give kids at an early age a place to volunteer and learn to give back. Our #KC4K mission is to teach our youth the importance of volunteering, having responsibility, and being compassionate at an early age, all while becoming a leader.
Rare Disease Community
Patient & Family Support Program
Our customized care packages called #PainBoxes serve as an incentive program for children starting treatment for hypophosphatasia (HPP). We also provide support and resources for patients and their families in the rare disease community.