Patient Advocacy Organizations
Here are a few resources that can help you find more information about autoimmune PAP, pulmonologists, and community.
PAP Alliance
The PAP Alliance is a patient advocacy organization dedicated to empowering patients and families affected by PAP through education, support, and community. They work to accelerate pathways to timely diagnosis, effective treatment, and groundbreaking research.
PAP Foundation
PAP Foundation is a nonprofit patient advocacy organization dedicated to finding a cure and improving the lives of people living with PAP. Through advocacy and collaboration, they promote research on PAP and provide support for PAP patients, healthcare professionals, and the public.
National Organization for Rare Disorders (NORD)
NORD builds community and creates a lasting impact by improving the well-being of people with rare diseases by driving advances in care, research, and policy. Their website includes a PAP Rare Disease Report and Video.
American Lung Association
Founded more than 120 years ago, the American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease through education, advocacy, and research. Their website includes a dedicated section about PAP, including information for the newly diagnosed and how to find a pulmonologist.
International Patient Organisation for Primary Immunodeficiencies (IPOPI)
IPOPI is a non-profit international patient organization dedicated to improving awareness, access to early diagnosis, and optimal treatments for primary immunodeficiency patients worldwide through global collaboration. They have created information about autoimmune PAP including a webinar .
Autoimmune Association
The Autoimmune Association is the world’s leading nonprofit organization dedicated to autoimmune awareness, advocacy, education, and research. They have information about autoimmune PAP on their website.
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