Sarcoidosis Europe

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


Research survey: Tell us about your experience of spirometry!

Because in Sarcoidosis the lung is affected up to 90 % the spirometry/lung function tests are very important in order to examine the effect of the disease and it's possible progression, to start the best available treatment in time. Therefore we support the actual research project of the medical scientific societies ATS (American Thoracic Society) and ERS (European Respiratory Society).

The anonymous survey responses will help to understand patients' experiences of spirometry and help us to agree on the most appropriate spirometry testing methods.

Moreover we know of many co-sufferers of Sarcoidosis that some lung function tests are sensitive only if severe damages already occured, and some general symptoms in Sarcoidosis like e.g. dyspnoe and fatique could not be detected.

Spirometry testing is a breathing test which measures the amount of air in your lungs and how quickly you can breathe out. Please only complete this survey if you have had your spirometry measured by a doctor, nurse or other healthcare professional.

Please follow this link to the questionaire. The survey will take only about 5-10 minutes to complete and will be open until 21 September 2018.

Thank you very much for helping us with this research project.


Press release from the 9 th European Conference on Rare Diseases 2018 Vienna: EURORDIS calls for new EU rare disease policy framework

Over the last 20 years, breakthrough legislation and policy on rare diseases and orphan medicines have been driven by the rare disease patient community and EU institutions, with a strong leadership from the European Commission (EC).

In order to address this evolving situation, and at a moment when certain EU policy actions are being discontinued, it is in fact a time to grow EU actions that will support and foster national actions and the EU citizens affected by rare diseases over the next 20 years in order to ensure 'No one left behind'. Please refer to this press release* of our ambrella organization.


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:

 

EPOS
Office-Address:

Uerdinger Str. 43

D - 40668 Meerbusch

Germany

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

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

Email: info@sarcoidosis.biz

 

 

English Deutsch Nederlands English Disclaimer