Learn About PAP. Take Control of Your Journey.
Whether you’re newly diagnosed, supporting a loved one, or seeking deeper insight into Pulmonary Alveolar Proteinosis (PAP), you’ve come to the right place. The Education Hub is your starting point for trustworthy, up-to-date information from leading experts, real patients, and partner organizations. Get the facts, understand your options, and take the next step with confidence.
What Is Pulmonary Alveolar Proteinosis?
PAP is a rare lung disease in which surfactant, a naturally occurring substance meant to keep your lungs open, builds up abnormally in the air sacs (alveoli). This buildup prevents oxygen from passing into the bloodstream, making breathing increasingly difficult.
The most common form of PAP is autoimmune PAP (aPAP) which is caused by the presence of autoantibodies to granulocyte/macrophage colony stimulating factor (GM-CSF) which prevents cells in the lung (macrophages) from removing the excess surfactant. There are other types of PAP (secondary PAP, hereditary PAP, congenital PAP) that are linked to hematologic disorders, environmental exposures, or genetic factors.
Key Facts About PAP
7 in 1 million
people are affected by PAP worldwide.
30-50 years old
is the age when PAP is most commonly diagnosed.
~90% of cases
are Autoimmune Pulmonary Alveolar Proteinosis (aPAP).
PAP Symptoms
Common symptoms overlap with asthma, pneumonia, or COPD and some people show no symptoms in early stages.
Shortness of breath (dyspnea)
Chronic cough
Fatigue
Unexplained weight loss
Chest discomfort
Diagnosis
Imaging Tests
Chest X-rays and CT scans often reveal a “crazy-paving” pattern unique to PAP.
Bronchoalveolar Lavage (BAL)
This test helps confirm excess surfactant buildup.
Blood tests
Particularly important in detecting autoimmune PAP (GM-CSF antibodies).
Treatment
Treatment options vary by PAP type and patient need. Ongoing monitoring is essential.
Whole Lung Lavage (WLL)
The most common treatment for moderate/severe PAP – this can be used for aPAP and hereditary PAP.
GM-CSF Therapy
Targets the underlying macrophage dysfunction in PAP.
Treating the Root Cause
In secondary PAP, managing the primary illness or exposure is key.
Living with PAP can feel isolating—but you're not alone. We’ve gathered practical tools and links to help you get the support you need, from insurance assistance to finding a clinical trial.
Take Action. Find Support.
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Clinical Trials and Research
IMPALA results
Patient & Disease Education
NORD’s PAP rare disease report with video
International Patient Organisation for Primary Immunodeficiencies leaflet on managing aPAP
IPOPI webinar on aPAP
Treatment & Diagnostic Programs
Savara’s early access program
A no-cost diagnostic blood test for autoimmune PAPAdvocacy & Patient Support Organizations
American Lung Association’s PAP section
Autoimmune Association blog post
Autoimmune Association: section on aPAP
PAP Clinical Center | PAP Foundation
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United States
Germany
Dr. Francesco Bonella
Denmark
Dr. Elizabeth Bendstrup
Japan
Dr. Inoue
Dr. Yamaguchi
France
Dr. Jouneau
Italy
Dr. Campo
Turkey
Dr. Cetinkaya
Netherlands
Dr. Veltkamp