Rare Lung Disease

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Information for Patients


HPS Patient Stories

Stories from patients with HPS.
For more information Click here 

HPS Members Photos

This is a selection of members of the HPS Network with HPS. They represent many different gene types. Click here

HPS Documentary

RARE is about the journey of a phase III clinical trial to treat the pulmonary fibrosis of HPS. Click Here

Clinical Trials Info

Clinical trials are medical research studies in which people participate as volunteers and are one way of developing new treatments and medications for rare diseases like HPS. Click here for more information.

ATS Patient Information Series -
What is Hermansky-Pudlak Syndrome

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org).
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.
To access this document Click here

ATS "Breathing in America" book

The Breathing in America: Diseases, Progress, and Hope compilation briefly describes respiratory diseases and the progress that is being made in the quest to find their cures. For Chapter on Rare Lung Diseases Click here

HPS Educational Resources

Find validated HPS education resources for patients of all ages

New Academic Papers