About sarcoidosis

Normally the immune system is activated and sends out groups of inflammatory cells when the human body encounters viruses or bacteria or suffers an injury. In sarcoidosis or Besnier Boeck disease the body continues sending groups inflammatory cells even when there is no outside danger. These cells cluster in nodules, known as granulomas, in patients’ organs and tissues.

Inflammatory activity, damage done by granulomas to organs and tissues, and related complications and syndromes, may disable patients and impair quality of life.

Sarcoidosis is rare, enigmatic and poorly understood. In some the disease resolves by itself in a few years, while others continue to suffer from its long-time impact. Fatigue is a hallmark of sarcoidosis, which may continue even after inflammatory activity itself has abated.

More than 150 years after sarcoidosis was first documented, its cause remains unknown and no medicine exists which is capable of curing it. Mortality, mostly due to pulmonary and cardiac complications, ranges between six and eight per cent. This makes scientific research into the disease all the more important.

Where to find more disease information?

Eurosarcoidosis’ focus is strictly on fundraising for European sarcoidosis research. Traditionally it is the role of national patient organisations in European countries to provide patient support and make disease information about sarcoidosis available to patients in their language(s). Therefore, on this page we only refer to resources provided by others. Please let us know if you think a relevant source is missing.

Multilingual information

Orphanet, the portal for rare diseases and orphan drugs, defines sarcoidosis as follows:

“A rare multisystemic, autoinflammatory disorder of unknown etiology characterized by the formation of immune, non-caseating granulomas in any organ(s), leading to variable clinical symptoms and severity. Clinical presentation is typically with persistent dry cough, eye or skin manifestations, peripheral lymph nodes, fatigue, weight loss, fever or night sweats, and Löfgren syndrome.” (ORPHA code 797)

Click here for more disease information in on the Orphanet portal in English, Dutch, French, German, Greek, Italian and Spanish.

In addition, the European Lung Foundation, the information arm of the European Respiratory Society, offers multilingfual factsheets about sarcoidosis for patients, relatives and friends as well.

Click here to access these factsheets, which are available in English, Bulgarian, Romanian and Turkish.

National patient organisations

National patient organisations exist in nine of the thirty-one countries Eurosarcodosis covers. These national sarcoidosis patient organizations are independent from Eurosarcoidosis. Their websites have more disease information in their respective language(s):

International resources

More disease information, mostly in English, can also be found in resources from outside Europe:

National Institutes of Health (NIH), a division of the United States federal government

Foundation for Sarcoidosis Research (FSR), United States

WASOG (World Sarcoidosis Association)