Vision.
We envision a future where no one with APDS feels alone—where families everywhere have access to accurate information, strong support systems, and equitable healthcare. Through national and international partnerships, we will be a united voice advancing research, early diagnosis, and rare disease awareness worldwide.
Why a Chameleon?
Almost everyone familiar with the rare disease community has heard the saying “When you hear hoofbeats, think horses, not zebras”. Therefore the zebra has become a symbol of the rare disease community. However we wanted to choose an animal that represents the invisible nature of Activated PI3K delta syndrome (APDS). Like chameleons, we are here and blend in with those around us. However, if you take the time to look closer, to get to know us, you will see the ways in which APDS affects every area of our lives. We invite you to take this journey with us.
Mission.
The APDS Rare Disease Coalition exists to bring hope, education, and advocacy to individuals and families affected by Activated PI3K Delta Syndrome. Founded in Monticello, Utah, our mission extends across the United States and globally. We work to raise awareness, build supportive communities, and collaborate with researchers, healthcare providers, and policymakers to improve care and quality of life.
Faces of APDS…
