Library

Find here useful documents linked to activities that our cross-European sarcoidosis patient advisory group has been driving forward to raise awareness of the needs of people with sarcoidosis.

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.