.png)
Our Story
APDS began with a simple but powerful need — to help families feel less alone while navigating a rare and often misunderstood diagnosis. From that need, a community was built to bring clarity, connection, and hope to those affected by Activated PI3K Delta Syndrome.
Our Mission
The journey of living with Activated PI3K Delta Syndrome (APDS) is often filled with uncertainty, unexpected turns, and challenges that can feel overwhelming at times. The APDS Rare Disease Coalition was created to ensure that individuals and families affected by APDS never have to navigate that path alone.
Founded in Monticello, Utah, our mission reaches across the United States and around the world through awareness, education, advocacy, and community support.
We are committed to helping families access trusted information, connect with supportive resources, and feel empowered throughout every stage of diagnosis and care. By collaborating with researchers, healthcare providers, advocates, and policymakers, we strive to deepen understanding, strengthen support systems, and foster hope for the future of the APDS community.
At the heart of our mission is a simple belief: every rare disease family deserves connection, compassion, and a community that understands.
Our Vision
We envision a world where every family affected by APDS is met with understanding, support, and hope from the very beginning of their journey.
By raising awareness, encouraging early diagnosis, supporting research, and building strong community connections, we aim to create a future in which individuals living with APDS have greater access to care and resources and the reassurance that they are never alone.
Why the Chameleon?
Within the rare disease community, the zebra is widely recognized as a symbol representing conditions that are often overlooked or difficult to diagnose. For APDS Rare Disease Coalition, however, we chose the chameleon as a symbol of the invisible nature of Activated PI3K Delta Syndrome (APDS).
Like a chameleon, many individuals living with APDS blend into the world around them. From the outside, their challenges may not always be visible—but beneath the surface, APDS can affect many aspects of daily life in complex and deeply personal ways.
Our chameleon represents resilience, adaptation, and the importance of being truly seen and understood. We invite you to look closer, learn more, and walk alongside our community as we raise awareness, support families, and bring hope to those affected by APDS.
You Are Not Alone
Whether you are newly diagnosed, searching for answers, supporting a loved one, or simply learning more about APDS, we want you to know that you are not alone.
At the APDS Rare Disease Coalition, we are committed to building a community rooted in compassion, connection, education, and hope.
Together, we can continue raising awareness, supporting families, and creating a brighter future for everyone affected by Activated PI3K Delta Syndrome.
Meet the
Medical Advisory Board
Our Medical Advisory Board brings together leading experts in immunology and related fields who provide clinical insight, guidance, and support for APDS education and awareness.
.png)
Meet Our Board of Directors
Gordon Kelley
Gordon is the Founder of the APDS Rare Disease Coalition and a dedicated advocate for individuals and families affected by rare disease. Living with APDS himself, he created the Coalition to increase awareness, improve education, and strengthen support for the global APDS community. Through collaboration, advocacy, and lived experience, he works to ensure patients and families feel seen, connected, and empowered throughout their journey.
Damion Tangle
Damian is the Director of Social Media & Outreach of the APDS Rare Disease Coalition and an advocate for self-advocacy and quality of life for individuals living with APDS. Diagnosed at the NIH in 2017, he brings lived experience of navigating chronic illness and emphasizes the importance of speaking up for one’s needs within healthcare. He is passionate about helping others live fully beyond their diagnosis through awareness, resilience, and support.
.png)
Tara O'Connor
Tara is the Director of Avocacy & Awareness of the APDS Rare Disease Coalition and the Founder & Certified Sleep Specialist of Little Sleep Wonders. She provides personalized sleep and wellness coaching for children and adults, using gentle, realistic strategies to create sustainable routines. Her passion for sleep health is rooted in her own lived experience with long-term sleep challenges, and she is dedicated to supporting families through education, awareness, and compassionate care.
Our Partners
.png)
ClinicalTrials.eu
Learn More →
.png)
.png)
JinIX
Learn More →