Association of Patients
other Granulomatous Disorders
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.
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.
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 regardless the language:
Uerdinger Str. 43
D - 40668 Meerbusch
+49 (0) 21 50 - 70 59 670
+49 (0) 21 50 - 70 59 671
Please support the actual research survey
on the use of and your experiences with complementary and alternative medicines and therapies among people living with a rare disease e.g. sarcoidosis.
In a lot in information calls with co-sufferers of sarcoidosis the question arise or personal experiences are mentioned
concerning complementary and alternative medicines.
In this largely not quality-controlled area of health care there are only very few medically proved treatments available respected to usefullness and risk assessment.
In order to collect the experiences of rare disease patients
in view of upcoming european harmonized medical care with e.g. herbal medicine our european ambrella for rare disorders (EURORDIS)
started a european survey which we want to support.
Do you suffer on a rare disease, like e.g. sarcoidosis?
If yes, what are your personal experiences with complementary and alternative medicines and therapies?
Please follow the
link to the EURORDIS questionaire,
choose your language and register at Rare Barometer Voices.
The registration only serves technically to ensure the questionaire is answered only once per person.
The questionaire itself is performed and evaluated anonymously.
Thank you very much for your support!