Treating sarcoidosis - understanding the professional guidelines

Available in 9 languages

A document aimed at people living with sarcoidosis, or their care givers to explain the recommendations in the European Respiratory Society (ERS) clinical guideline for the treatment of sarcoidosis.

This document covers cases of sarcoidosis that affects the lungs, the skin, the heart and brain as well as fatigue (extreme tiredness) that is caused by sarcoidosis. It does not include treatments related to other issues, such as eye issues or pain associated with the condition. This is because there is not yet enough research into these areas to draw conclusions about the best treatments

Available in English, Danish, Dutch, French, German, Italian, Serbian, Spanish, and Swedish.

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Patient charter

The Sarcoidosis Patient Charter outlines our joint strategy for the future improvement of patient care and quality of life for people with sarcoidosis.

We hope that the charter’s Call for Action will raise awareness and widen understanding about the impact that this condition has on many people.

We call on patients, caregivers, healthcare professionals, policy makers and the general public to support the charter and to help disseminate it as widely as possible:

Resources from FSR

Treatment priorities for patients

Image of ERJ Open Research article on sarcoidosis treatment prioritiesA joint letter - Sarcoidosis: patient treatment priorities - highlights the findings of an international patient survey.

The survey asked people with sarcoidosis to rate the importance of different treatment outcomes: 1,842 people responded, with 'quality of life' and 'functionality' ranking as the two most highly-rated outcomes for treatment and care.

The letter also calls for:

  • The assessment of ability to work and the provision of supportive measures.
  • Clinicians to work in a multidisciplinary way to ensure a holistic approach.
  • For sarcoidosis specialist centres to be established in every country.

The letter was written by the ELF sarcoidosis patient advisory group and healthcare professionals working in the field. A poster on the survey's preliminary findings was presented at ERS International Congress 2018. Download poster as a PDF.

Patient compass

Patient journey

In 2020, a sarcoidosis patient journey was developed by the group as part of the activities of ERN-LUNG.

This journey represents the views of the patient community and was based on a report that sarcoidosis patient organisations identified as the most important priorities/issues for individuals with sarcoidosis in the areas of diagnosis, treatment, follow-up care, education and communication.

We hope it will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

Glossary

Common words relating to sarcoidosis with an explanation: