RESOURCES

Welcome to the APDS Rare Disease Coalition Resources page.

Activated PI3K Delta Syndrome (APDS) is a rare primary immunodeficiency that affects immune function, increasing susceptibility to infections and other complications. Early diagnosis, informed care, and access to specialized treatment can significantly improve outcomes.

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
  • Preparing for appointments
  • Referral guidance and coordination