APDS Rare Disease Coalition

The APDS Rare Disease Coalition is a patient-led nonprofit dedicated to improving the lives of individuals and families affected by APDS (Activated PI3K Delta Syndrome), an ultra-rare primary immunodeficiency. We are committed to increasing awareness, providing education and support, fostering meaningful connections within the rare disease community, and advancing advocacy and research. Through collaboration with patients, caregivers, healthcare professionals, researchers, and industry partners, we strive to ensure that no one affected by APDS has to navigate their journey alone. Our vision is a future where every person living with APDS has access to timely diagnosis, quality care, supportive resources, and hope.

The APDS Rare Disease Coalition is a growing, patient-led nonprofit organization dedicated to serving individuals and families affected by Activated PI3K Delta Syndrome (APDS), a rare primary immunodeficiency that is often underrecognized and misunderstood.

Because APDS is so rare, many patients experience delayed diagnoses, limited access to knowledgeable providers, and feelings of isolation. We are working to change that by increasing awareness, providing reliable educational resources, connecting patients and caregivers with one another, and advocating for improved care, research, and earlier diagnosis.

Our organization is built on the values of compassion, collaboration, integrity, inclusion, and hope. We believe that every voice matters and that meaningful change happens when patients, caregivers, healthcare professionals, researchers, and advocates work together.

As a growing nonprofit, we are expanding our programs and partnerships while planning awareness events, educational initiatives, fundraising efforts, and community outreach. We welcome individuals from all backgrounds who are passionate about making a difference—even if they have no previous connection to APDS or rare diseases. Every skill, perspective, and lived experience can help strengthen our mission and create lasting impact for our community.