Sarcoidosis Europe

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


Sarcoidosis Reference Network Sarcoidosis patient treatment priorities - survey results Rare Disease Day 2019 Call for new EU rare disease policy framework Who we are

Sarcoidosis Reference Network

in the European Reference Networks for Rare Diseases (ERN)

In this great European initiative for rare diseases Sarcoidosis was associated due to itís largest organ involvement of the lung with the European Reference Network for rare lung diseases (ERN-LUNG) and especially to the core network of interstitial lung diseases (ILD) due to the medical systematic.

More over in this European Network approach the interdisciplinary cooperation within each ERN and with the other ERNís is in the central scope of this initiative. This is of course in accordance of the general character of the Sarcoidosis disease which can affect nearly all organs and therefore reflects the needs of Sarcoidosis patients.

The vision and key objectives of this initiative is to improve the care and treatment of people living with a rare disease in Europe, to build a network of experts to collect and enhance medical knowledge and to increase research.

The 'Sarcoidosis Europe' with national sarcoidosis patients' associations and along with many ambrella organisations on other rare disorders in Europe is engaged for several years now to foster a network of expert centers in Europe collaborating for the benefit for Sarcoidosis patients, especially severely affected patients. This is a model for interdisciplinary and cross-border collaboration in health care. So we are very happy, that the start with lotís of small and large steps was done successfully. Since the beginning of this initiative we are supporting it as member of the European Patient Advisory Group (EPAG) of ERN-LUNG.

Thus the European Reference Centers for ILD are available with their expertise especially for severely affected Sarcoidosis patients and their local doctors when looking for special advise concerning diagnostic, treatment and follow-up.

In Europe these are currently 28 university and special hospitals in several European countries. The medical ERN members have access to a special European case conference software with up to date patient data security and data protection (Clinical Patient Management System CPMS) allowing also cross-border expert advise.

A lot of the European Sarcoidosis experts are well known to several of the national Sarcoidosis patientsí associations or are even member of their medical advisory boards.

We therefore are very thankful to the experts in Europe making available their expertise to the patients and their local doctors to bring together experience in this rare disease and connecting to actual Sarcoidosis research for the severely affected Sarcoidosis patients.

Position the mouse on the European map on the country of interest and click left to see the ILD reference centers with the links to their information websites and contact details in this country if any.


Credits: Many thanks to Phil Archer for sharing this very instructive svg example.

The following links show also the ILD centers in ERN-LUNG in alphabetical order by country and city name here.

Belgium This link opens in new window France This link opens in new window Italy This link opens in new window
Czech This link opens in new window Germany This link opens in new window Netherlands This link opens in new window
Denmark This link opens in new window Great Britain This link opens in new window Spain This link opens in new window

ERN-LUNG is a non-profit, international, professional, patient-centric and scientific network and it is committed Europe-wide and globally to the prevention, diagnosis and treatment of rare respiratory diseases through patient care and advocacy, education and research. In keeping with these goals, ERN-LUNG will interact with both national and international organisations which have similar goals.

ERN-LUNGís vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from them in people of all ages.

Please read more about the European reference networks and watch the Video on the website of the European Commission (EC).

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Sarcoidosis patient treatment priorities - survey results

As a joint action with Sarcoidosis researchers from US and Europe and support of the European Lung Foundation (ELF) the sarcoidosis patient organisations in Europe collaborated and promoted this first survey on treatment priorities of sarcoidosis patients. The response to this questionaire within 1,5 month being online was really large: 1.842 participated. Thanks very much to all of those. The detailed results are just officially published in the European Respiratory Journal Open Research in the linked article 'Sarcoidosis: patient treatment priorities' (ERJ Open Research 2018 4: 00141-2018; DOI: 10.1183/23120541.00141-2018).

The ranking found in this survey shows: Quality of Life, functionality, survival, imaging for diagnostics and follow-up, adverse events of medical treatment, blood tests, pulmonary function tests. Please note some of the key messages below:

"Scans, tests and examinations are of course crucial in the treatment, but the well-being and the quality of life determine how much I suffer from sarcoidosis. And that is the most important thing."

"Our survey also highlighted that assessing ability to work and provision of supportive measures in this area were additional important factors for consideration. The survey results reinforce the view that clinical indicators should not be the only target of treatment and that sarcoidosis clinicians should be encouraged to assess patient-reported aspects so that they can be incorporated into care."

"Clinicians should work in a multidisciplinary way. This is particularly important for multisystem diseases to ensure that specialists can contribute their expertise at the same time to enable quicker, accurate and comprehensive diagnosis, treatment and follow-up."

"Access to a range of services, such as pain management and psychological support, is important to achieve."

"Sarcoidosis specialists and specialist centres are needed in every country."

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Rare Disease Day 2019: coordinated care, more research, solidarity and recognition for rare disease patients!

The countdown has begun - Rare Disease Day 2019 is on 28 February!

Everyone around the world can get involved from now until the big day itself to show their support for the rare disease community - hold an event, put up the official poster in your office, or #ShowYourRare on social media!

You can also participate in EURORDIS events being held throughout the month of February in celebration of Rare Disease Day.

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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.

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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 their 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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