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Information for Patients


Pulmonary Sarcoidosis

Pulmonary Sarcoidosis is the most common form of sarcoidosis and occurs in more than 90% of patients. Approximately 10% to 30% of patients with sarcoidosis develop progressive pulmonary disease. However, 30% to 60% of patients with pulmonary sarcoidosis are asymptomatic (experience no symptoms).  This website provides an understanding of the diagnosis, treatment, and care options for pulmonary sarcoidosis.

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FDA Patient Listening Session on Pulmonary Sarcoidosis

Whitepaper from April 2022 FDA Patient Listening Session on pulmonary sarcoidosis to improve the diagnostics, therapies, and clinical trial pathways for those impacted by pulmonary sarcoidosis.

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Clinical Trials in Sarcoidosis

List of active clinical trials in pulmonary sarcoidosis aimed at improving the care and outcomes of those impacted by this condition.

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Challenges of Sarcoidosis and Its Management a Summary:

Summary of 2022 New England Journal of Medicine Article exploring the changes with treating and managing sarcoidosis.

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Having a COVID Response Plan as Someone Living with Sarcoidosis

A patient’s perspective on the importance of working with you healthcare team to plan for the best but prepare for the worst for those living with sarcoidosis at risk for COVID-19. 

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Primary Ciliary Dyskinesia

mRNA (messenger RNA) therapy is a promising approach to correct the underlying defects that cause PCD. To benefit from these therapies, it will be important for patients to know their PCD genetic profile. Learn more. 

Learn more about How common are PCD genetic variants in the general population?

Recent research suggests that PCD may be more common in people of African ancestry than in other groups. As in many rare diseases, understanding the incidence and prevalence of the disease in different communities will aid with better, earlier diagnosis. Learn more. 

With the support of the RAO Project, the PCD Foundation has begun a groundbreaking research initiative focused on enhancing health outcomes and improving access to genetic testing for PCD and related disorders in underserved areas across the Americas. The expansion of gene identification is a critical step needed to improve early diagnosis of this rare disease and provide families with hope for the future. Learn more.


Pulmonary Sarcoidosis Primary Ciliary Dyskinesia
Pulmonary Sarcoidosis is the most common form of sarcoidosis and occurs in more than 90% of patients.  There is currently no test for PCD that picks up 100% of cases or that can totally rule PCD out.
Advanced forms of pulmonary sarcoidosis include advanced pulmonary fibrosis (ILD) and pulmonary hypertension. Some clinical symptoms of PCD can be like cystic fibrosis and primary immune deficiency.
  PCD is caused by changes in the genetic information (variants) on more than 50 genes.


ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM ( The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one's personal health care provider.