The patient advisory group has been involved in a range of projects:

• Sarcoidosis Treatment Guideline

  Representatives from the patient advisory group have been members of the ERS Sarcoidosis Treatment Guideline working group which is due to publish its recommendations in September 2020.

  An article by the sarcoidosis patient advisory group: Sarcoidosis: patient treatment priorities was published in ERJ Open Research in December 2018 and highlights the findings of our patient survey, the findings of which will be reflected in the final guideline.
  

• Sarcoidosis patient compass

  An interactive tool to help you think about which questions are important for you to ask your doctor abour your condition. Developed by the patient advisory group and medical experts in the field.
  The compass is available to download in a number of different languages.

• Sarcoidosis patient journey

  In 2015, patient organisations in the ELF patient advisory group identified the most important priorities/issues for individuals with sarcoidosis in the areas of diagnosis, treatment, follow-up care, education and communication.

  In 2020, these findings were used to create a sarcoidosis patient journey as part of the activities of ERN-LUNG. This journey represents the views of the patient community. It will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

  Download the sardoidosis patient journey (PDF)

• Sarcoidosis and ILD Belgrade Conference

  The ELF sarcoidosis patient advisory group members were invited to attend the Management of Sarcoidosis and Interstitial Lung Diseases conference in Belgrade from 22-24 April 2019 by Professor Dr Violeta Mihailovic-Vucinic, President of the Respiratory Society of Serbia and Serbian Association of Sarcoidosis.

  The meeting was organised by the Respiratory Society of Serbia and Serbian Association of Sarcoidosis with the aim of bringing specialists together to share and learn about new insights into the diagnositc and therapeutic approach of sarcoidosis and other ILD. Members of the group were also invited as speakers to highlight patient experiences of sarcoidosis. ELF sarcoidosis patient advisory group attended all sessions and also held their own patient meeting during the conference.