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Picture: Sarcoidosis patient advisory group members at ERS Congress, Paris 2018
A joint letter about the treatment priorities for people living with sarcoidosis, written by the ELF sarcoidosis patient advisory group and healthcare professionals working in the field, has been published in ERJ Open Research.
In early 2018, we launched an international survey aimed at people with sarcoidosis, asking them to rate the importance of different treatment outcomes to them.
1,842 people responded, with ‘quality of life’ and ‘functionality’ ranking as the two most highly-rated outcomes for treatment and care.
The letter highlights these results and also calls for:
Thank you to everyone who contributed their views to the survey.
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ELF is a non-profit organisation registered as a UK company (VAT no. GB 115 0027 74) and charity (no. 1118930).
Our Brussels office enterprise number is 0738.383.695
European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79