Useful links

Many PAP patients and their relatives have difficulties finding information about PAP on the internet. It can be a tough job because information about the disease is scarce.

However, there are a number of sites that deal with PAP or rare diseases one way or the other. For your convenience we have listed them for you below.


EU pulmonary alveolar proteinosis network – a PAP focused website aimed primarily at clinicians. Established by doctors and available in English, Italian and German.

PAP Foundation

The PAP Foundation is a non-profit patient advocacy organization dedicated to finding a cure and to improving the lives of those affected by PAP. The site is available in English.


Rare Disease Europe is an organization that works to put rare diseases on the political agenda.
There is no specific information about PAP. The site is available in English.


National organization for rare disorders. An American organization for patients with rare disorders. Specific information about PAP is available.

Rare lung diseases consortium

The RLDC is a unique collaboration among patient organizations, clinical investigators and the National Institutes of Health. Available in English.


UpToDate® is an evidence-based, physician-authored clinical decision support resource aimed primarily at physicians. Available in several languages

PAP Guide

English section of the Japanese PAP Research Group. The section is intended for medical staff but can also be read by others. Available in English

American Psychological Association

The American Psychological Association is the largest scientific and professional organization representing psychology in the United States, with more than 122,500 researchers, educators, clinicians, consultants and students as its members. Available in English

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