Rare Lung Disease

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Information for Patients

Rare Lung Disease Week

Lung Information for Patients

  • Breaking news about Hermansky-Pudlak Syndrome (HPS) and the HPS community

    • See breaking news stories about Hermansky-Pudlak Syndrome (HPS) and the HPS community.

  • Basic information and standard-of-care for HPS

    • This page contains easy-to-understand information about HPS as well as some basic standard-of-care information.

  • Stories of those living with HPS

    • Learn more about living with HPS from the people who do it every day! This page contains several patient profiles.

  • Photos of people living with HPS

    • The phenotype of people with HPS varies widely. See photos of people living with all types of HPS.

  • Media library

    • See video clips about HPS or take a look at some of the recorded sessions from past HPS Conferences.

  • HPS Conferences

    • Get information about upcoming HPS Network Conferences. Learn about planned speakers, sessions and how to register.

  • Connect with others living with HPS

    • Learn how you can get involved in the HPS Network online community.

  • ATS Patient Information Series

    • 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.

  • ATS Breathing in America Book

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

  • Join the HPS Network

    • Join the HPS Network. It’s free! The Network will send you a welcome packet with information about HPS to be shared with doctors, family, school nurses or anyone else that needs to know about HPS. You will also receive the HPS Network News free of charge.