Sarcoidosis Europe

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS)  

Sarcoidosis Survey: Which treatment outcomes are most important to you?

A sarcoidosis treatment guideline is being developed by a European Respiratory Society (ERS) working group in cooperation with the American Thoracic Society (ATS) and will be used by doctors and other healthcare professionals to help them treat people with sarcoidosis in the best way possible.

To help with this, we want to find out the outcomes that are most important to patients in order to make sure that the recommendations in the guideline take into account aspects of treatment which matter to patients.

If you are an individual with experience of sarcoidosis then please complete our survey at:

All responses are anonymous and will feed into the activities of the working group to ensure that patient views are considered.

The survey will take about 5 minutes to complete and will be open until 23 February 2018.

Now it’s your turn. Please support this initiative.

Thank you very much in advance for your help.

Who we are

EPOS was founded as the international umbrella under which all national patients' organizations will be represented. Founded in the Spring of 2001 by SILA (United Kingdom), DSV (Germany), SSARV (Switzerland) and SBN (Netherlands), EPOS was joind by BBS (Belgium) in autumn 2006 and by ISARC (Ireland) in spring 2008.

EPOS has clearly marked targets and ideals. These include active participation in the foundation of (new) national organizations and also to stimulate international research and provide a forum for the exchange of ideas, experiences and expertise. The priority remains the provision of adequate information for patients and all others involved, in the broadest sense.

The suffering of the long-term sarcoid patient must be recognized as an unsatisfactory situation. Not only is the cause unknown but a medical cure remains undiscovered. In order to help these patients and those who aim to help them, the European Association of Patients Organizations and other Granulomatous Disorders (EPOS) was brought into being.

On the next pages, the members will present the general thoughts and issues in greater detail and, more importantly, in the 'mother ' languages.

For questions and/or suggestions EPOS can be reached by mail:



Uerdinger Str. 43

D - 40668 Meerbusch


Phone: +49 (0) 21 50 - 70 59 670

Fax: +49 (0) 21 50 - 70 59 671




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