RESOURCE

Welcome to the APDS Rare Disease Coalition Resources page. Our mission is to empower individuals, families, and providers affected by Activated PI3K Delta Syndrome by offering clear education, trusted medical information, support tools, and access to the broader rare disease community.

Medical Treatment & Management

FDA-Approved Treatment

Joenja® (leniolisib) – the first targeted therapy approved for APDS.
Resources include:

  • How Joenja works

  • Who qualifies

  • Common questions to ask your immunologist

Supportive Treatments

  • Immunoglobulin replacement (IVIG/SCIG)

  • Antibiotic and antiviral management

  • Asthma/allergy management

  • Lung monitoring (CT scans, PFTs)

  • Nutritional and growth support

Finding Medical Care

  • Immunologists

  • Geneticists

  • APDS clinics

  • Telehealth immunology providers