Sarcoidosis Europe

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

Sarcoidosis Reference Network

In this great European initiative for rare diseases Sarcoidosis was associated due to it’s 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 ERN’s 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 lot’s 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 patients’ 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 (actually 27) in ERN-LUNG in alphabetical order by country and city name here.

Belgium	France	Italy
Czech	Germany	Netherlands
Denmark	Great Britain	Spain

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-LUNG’s 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).

Sarcoidosis Expert Advice

The European Reference Network for Rare Lung Diseaes (ERN-LUNG) is the only one uptodate to provide this general expert service to patients and their care given doctors. Please ask your question to the ERN-LUNG Expert Advice Knowledgebase. This service is available in English and German right now. Please use.

It is important to know, that we will not be able to make a personal diagnosis or give you a personal treatment recommendation online. For such please refer to the ERN-Lung reference centers to achieve personal diagnotics and treatment as well as to recieve bross-border referal to experts for your local health care provider/doctors.

ERS Virtual School of Sarcoidosis

The European Respiratory Society (ERS) is pleased to share that registration is now open for the Virtual School of Sarcoidosis for all different medical professions. Registration dealine is April, 16 th 2023.

This course will allow different medical specialists to share their knowledge about sarcoidosis and give the attendees an excellent opportunity to ask medical experts organ-specific questions regarding sarcoidosis.

The course will follow a varied format, consisting of lectures, interactive workshops, case-based sessions and question and answer discussions, in which participants will cover:

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).

New medical guideline on treatment of Sarcoidosis

The European Respiratory Society (ERS) had developed and published a new medical guideline on treatment of Sarcoidosis by European and American Sarcoidosis doctors and researches firstly with the involvement of patient organisations and patient representatives from Europe and the USA.

Since the 1999 Statement on Sarcoidosis this is now the neccessary update taking into account the medical and scientific developments over the last more than 20 years compiling the uptodate evidence and experts' experiences in treating different mayor and critical organ involvements as well as treating general symptoms of Sarcoidosis as a multi-systemic disease.

Please find the full ERS guideline text ERS guideline text and the patient friendly summary in lay language performed and provided by the European Lung Foundation (ELF) in different languages.

Thank you so very much to all medical experts and active patient representatives for their voluntary work all over and of course for the scientific and organisational support of ERS and ELF!

Sarcoidosis Online Seminars

Recordings of the worldwide first sarcoidosis online seminars for patients and carers on the new guideline for treatment of sarcoidosis patients in several languages are now published.

For all who missed these online seminars live we are very happy that the recordings could be published now on the internet.

Medical sarcoidosis experts and researchers from Europe and the US being members of the international guideline working group from various countries first explain the new European guideline on treatment of sarcoidosis patients before they are answering many questions of us - sarcoidosis patients from around the world. By the way this is also the worldwide first treatment guideline on sarcoidosis with active involvement and cooperation of sarcoidosis patient associations and sarcoidosis patient advocates from Europe and the US.

Please use this single and unique option to inform yourself on first medical expert level about the actual evidenced based information on uptodate world research and knowledge on treatment of your sarcoidosis disease.

We are very thankful to our European cooperation partner ELF (European Lung Foundation)



and of course to our member and parent and sister organisations of sarcoidosis patient associations in different countries and patient advocates in Europe and the US for there continuous and trustful engagement and support of our common vision.

Please find the recordings of these worldwide first sarcoidosis online seminars for patients with medical experts concerning the new treatment guideline on the website of ELF on sarcoidosis (https://europeanlunginfo.org/sarcoidosis/library/) in English, French, Italian and Spanish, as well as the comprehensive version in Chinese, Danish, Dutch and Serbian.

Besides organ specific treatment options you will find also such for general sarcoidosis symptoms like fatique and dysponea in the new guideline and also addressing the needs for further and new research areas for sarcoidosis.

Like before we will inform all about upcoming research projects with the possibility to join and support as sarcoidosis patients.

Therefore thank you so very much for your permanent interest as sarcoidosis patients and carers to go for and support new base research and clinical studies in our disease with so many open questions and unmet needs.

Let's go on together - there is no other lobby for our common patients' interests than our solidarity community!

Sarcoidosis Patient Compass

This is a new service of European patients' associations for all Sarcoidosis patients!

This is an interactive tool to help guide you through your sarcoidosis journey. It will help you understand which questions to ask your doctor. The importance of each point will be determined by the type of your sarcoidosis, and your understanding of your condition. Read and be aware of all the points but consider carefully only those points which are important for you at this current time. You are encouraged to use the tick boxes and to refer back to the compass over time.

Please follow this link to the Sarcoidosis Compass in 6 languages.

Please feedback your user experience to help us improve this tool. Thank's!

Sarcoidosis Patient Journey

The way to the right diagnosis is not always straight and easy. Like in many rare diseases the differential diagnosis is a complicated journey for patients and their doctors with pitfalls of possible misdiagnosis or even mistreatment as the picture below illustrates. With our European ambrella organisation for rare disorders EURORDIS we supported the underlying study.



Please find here the Sarcoidosis Patient Journey^* which was developed by European Sarcoidosis Patients‘ Organisations and patient advocates within the framework of the Sarcoidosis Patient Priorities Project of the European Lung Foundation (ELF) based on an template of EURORDIS for the European Reference Networks for Rare Diseases (ERN). It represents the views of the patient community while the 6 European patient associations incorporated representing over 7,000 Sarcoidosis patients in Europe. It outlines not ony the clinical presentation and patient needs at each of the stages of the patient journey, but reflects also recommendations of what 'good care' and support would look like in the view of the patient community.

Sarcoidosis Patient Charter

The ELF Sarcoidosis Patient Advisory Group (SPAG) outlines their joint strategy for the future improvement of patient care and quality of life for people with sarcoidosis. Their hope is that the charter’s Call for Action will raise awareness and widen understanding about the impact that this condition has on many people in Europe and worldwide. The SPAG calls on patients, caregivers, healthcare professionals, policy makers and the general public to support the Sarcoidosis patient charter and to help disseminate it as widely as possible.

Research surveys: What is your experience with Sarcoidosis and COVID-19?

Please support these surveys on the effect of COVID-19 pandemic - both on specific effect on Sarcoidosis patients - as well as on more general aspects of rare disease patients and those with a chronic condition - all of them Sarcoidosis patients may have to face also!

Interaction of Sarcoidosis and Covid-19 virus
Sarcoidosis researchers need your help. We are trying to determine:
- How frequently sarcoidosis patients are infected with COVID-19 (corona virus).
- If a sarcoidosis patient is infected with COVID-19, what happens to them.
- Does having sarcoidosis or being on treatment make one more likely to have problems with COVID-19?
If you are interested in helping us learn the answer to this question, we ask you to complete the questionaire in English found at COVID-19 survey in sarcoidosis patients. Please find here preliminary results of the first 1,600 responders as well as an interview with the principal investigator Prof. Dr. Baughman, MD. The survey is ongoing. Please help and take your active part in this sarcoidosis survey.

Effect of the Covid-19 pandemy on rare diesease patients
The next survey with our European ambrella organisation EURORDIS is essential for the rare disease community including us as Sarcoidosis patients. It will enable us to measure how the virus is affecting rare disease patients’ lives and give us the possibility to communicate facts and figures to decision-makers, so that people living with a rare disease are not left behind when handling the crisis.

The survey should take no more than 15 minutes to complete. All responses are anonymous and will be kept in secure storage only accessible to the Rare Barometer research team.

Through asking questions such as how the COVID-19 pandemic is affecting patients’ care, social care, employment situation, and mental-health, we will be able to better understand this unprecedented situation. This survey is open to people living with a rare disease and their family members from any country in the world. It is translated in 23 languages. The more people will take the survey, the stronger our voice will be!

Please follow this link to the EURORDIS survey in 23 languages.

Actually over 7,000 persons participated. Have a look at the preliminary results^* of the first 5,000 responders.

This survey runs only for a few days left. Please take your chance immediately.

If you like, have a quick look at the results of a former survey^* showing the serious impact on everyday life of rare disease patients, their families and carers.

Thank you very much in advance for your participation in all of these most actual research projects!

Recommendations: How to protect people living with a rare disease in the COVID-19 pandemic as confinement measures are being lifted

The COVID-19 pandemic has had an unprecedented impact on people and health systems. EURORDIS-Rare Diseases Europe already brought to urgent attention the needs of the 30 million people living with a rare disease in Europe as one of the most vulnerable populations during the crisis. The recent EURORDIS COVID-19 survey shows that the pandemic heavily impacted the rare disease population. More than two months later, confinement measures are slowly being lifted in many countries. As the virus still circulates and as measures are constantly changing, it is crucial that COVID-19 post-confinement responses and policies in every country, region or locality prioritise the specific needs of vulnerable populations, including people living with a rare disease. The risk for an exacerbation of pre-existing inequalities is very real and will translate into worse health outcomes for all, not just the most vulnerable. It is crucial to act now to limit collateral damage.

Please read the common position paper^* on how to protect people living with a rare disease in the COVID-19 pandemic as confinement measures are being lifted.

Research: Big Sarcoidosis Survey

We want a better understanding of who is affected by sarcoidosis, how they are affected, the possible causes and how they are being treated by healthcare professionals in order to identify the issues for future research from the patients' perspective. Please contribute to the Big Sarcoidosis Survey of our member association SarcoidosisUK. Thank's a lot for support of future research priorities.

Sarcoidosis Factsheet

The European Lung Foundation (ELF) with the Sarcoidosis Patients' Priorities Project has created a new sarcoidosis fact sheet on symptoms, diagnosis, treatment and support. Please follow this link to the Sarcoidosis Factsheet.

European rare disease community calls for more ambitious health programme in the face of budget cuts

Have we already forgotten the lessons learnt from COVID-19? With our European ambrella organisation for rare diseases EURORDIS we support the following statement calling on the European Commission, the negotiators of the European Parliament, and the German Presidency of the European Council to take action to reverse the European Council’s drastic reduction of funding to the EU4Health programme.

We strongly supported the European Commission’s proposal for the ambitious EUR 9.4 billion standalone EU4Health Programme, which aligns with the want of 70 % of European citizens to see more health-related actions at the European level.

In light of the current COVID-19 pandemic, it also showed a willingness to learn from the mistakes of the past and was a great step towards avoiding replicating them in the future. EURORDIS and EPOS finds the European Council’s recent decision to reduce the budget to EUR 1.7 billion coming from the Multiannual Financial Framework (MFF) regrettable. It has a decisive impact on what can be achieved within this new framework. Please follow this link to the press release^*.

A new pilgrimage for sarcoidosis: walking for quality of life

Ange van Ommen is a sarcoidosis patient who, after several years of severe illness, walked from her home in the Netherlands to Santiago de Compostela (Spain) in 2012. Severe illness requires you to rediscover who you are, within the limitations of the disease, a homecoming to the self as it where. This has inspired Ange to walk home from Santiago de Compostela this year. She will start the 2.600 kilometres long walk in Santiago de Compostela on April 13th and hopes to arrive home mid-August.

Raising money for charity. Ange is grateful to have found the tools, including her pilgrimages, that have allowed her sarcoidosis to become a stabilized chronic illness and given her a new lease on life. With this pilgrimage, she'd like to give back to the sarcoidosis community by raising money for research into the quality of life with sarcoidosis through the Dutch sarcoidosis patient organisation: Sarcoidose.nl.

If you'd like to support Ange, you can donate here (https://sarcoidose.digicollect.nl/ange-van-ommen).

Meeting fellow sarcoidosis patients along the way. Ange would love to stay with fellow sarcoidosis patients on her pilgrimage. If you live along the route and would like to host her, please email to ange@sarcoidose.nl.

In France and Belgium, she'll pass through: Bayonne, Peyrehorade, Dax, Bordeaux, Saintes, Tours, Poitiers, Beaugency, Paris, St. Quentin, Maubeuge, Nivelles, Bruxelles, Mechelen, Antwerpen, Wuustwezel, and Meer.

Thank you very much for your donation and your personal support along her European pilgrimage for Sarcoidosis!

Campaign for access to care for people with rare diseases

Have you experienced difficulties in accessing a treatment for your condition, including medicines, medical devices, surgeries, or medical consultations?

The EURORDIS Access Campaign Questionnaire is inviting anybody living with a rare disease who has experienced difficulties accessing treatment to respond to our brief online Questionnaire by Monday 30 October, 2023.

Key developments in pulmonary fibrosis research

In the third session of a new series of monthly and free webinars for the pulmonary fibrosis community Prof. Dr. med. Michael Kreuter, Mainz/Germany, Dr. med. Pilar Rivera-Ortega, Manchester/UK, and Dr. med. Maria Molina Molina, Barcelona/Spain, discussed key developments in pulmonary fibrosis research and highlights from the 2023 European Pneumology Congress that took place in Milan/Italy in September 2023. The session was moderated by Steve Jones, EU-PFF President. This online session maybe interesting for all sarcoidosis patients suffering from its fibrosing subtype, so-called Sarcoidosis type IV. The recording is now available on the web page (https://www.eu-pff.org/eu-pff-summit-webinars/).

Thank's to our colleagues of the European Federation for pulmonary fibrosing diseases for their constantly ongoing support.

Europe-wide survey on treatment adherence in patients suffering from pulmonary fibrosis

Since very few recent years only new treatment options for so-called idiopathic lung fibrosis is available at all, and even more recently - new treatment for other fibrosing interstitial lung diseases like e.g. Sarcoidosis type IV, is available for our doctors and us patients in Europe.

But of course these new medicines against this progressive and life threatening subtype of different diseases have possible side-effects which patients have to cope with. How is their experience concerning access to new treatment options in Europe, what are their experiences with treatment and co-treatment to minimize these side-effects, how are their real-world-experiences as patients to follow the medicine intake instructions in daily life and which improvements would help them to achieve optimal benefit from these new treatment options.

In order to find out we would like to ask you, when you are a Sarcoidosis patient suffering from the fibrosing subtype of Sarcoidosis (so-called Sarcoidosis type IV), to take a few minutes and share your patient experiences - fully anynomized due to the European General Declaration of Personal Data Protection.

This online survey is performed by our long-term cooperation partner the European Pulmonary Fibrosis Federation as the European ambrella organization for patient organizations for fibrosing lung diseases. It will be scientifically evaluated and is available in English, French, German, Greek, Italian, Polish, Romanian, and Spanish languages and will run from September 6th until November 11th 2023.

Of course we know that these new treatment options may be helpful and relevant for at best and at least about 10 % of us Sarcoidosis patients only, but in now more than 140 years of medical scientific history of our disease this could be the third major breakthrough in it's history of treatment options. After corticosteroids got available to civilians after World War II in Europe the letal rate of us dropped down from somewhere above 30 percent to about less than 10 percent of us, just decreasing the inflammatory progression before getting fibrotic. For all patients which Sarcoidosis don't respond to corticosteroids or other immunosuppressive agents the development and availability of TNF-alpha-Antagonist medicine (Biologicals) could help them to decrease or stop inflammatory progression.

New anti-fibrotic treatment options may give our co-sufferers with the progressive fibrosing type of Sarcoidosis some more - maybe essential - years on the waiting list to lung transplant.

Since in 1993 Sarcoidosis hit me, I met about 15 co-sufferers in person in Germany with this fibrosing subtype, passed away under immunosuppressive medication, because there was no anti-fibrotic drug available anywhere on earth, and I miss them. It was not only a teacher in Munich, a nurse in Berlin, our former Sarcoidosis support group leaders in Munich, Hannover and Dortmund or former board members of our association from Berlin or Dortmund but also famous actresses like Margot Trooger in Germany, Bernie Mack in the US or writer and dramatugist Thomas Bernard in Austria.

So we really know what we are fighting against!

The letal lung involvement of Sarcoidosis is only one of the five top letal risk organ involvements of Sarcoidosis we are fighting! Please help us with your support and membership in our Sarcoidosis family!

Who we are

EPOS was founded as the european umbrella under which the national patients' organizations will be represented. Founded on October 23th, 2000 by Sarcoidose.nl (Netherlands) formerly SBN, DSV (Germany), SarcoidosisUK (United Kingdom) formerly SILA, and SSARV (Switzerland). 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:

P.O. Box 30 43