Sarcoidosis Europe

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


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

 

 

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