Four PAG representatives took part in an international working group to develop a clinical practice guideline for the treatment of sarcoidosis, available in multiple languages.

The guideline, published by the European Respiratory Society, includes evidence-based treatment recommendations for cases of sarcoidosis that affect the lungs, skin, heart and brain as well as fatigue caused by the disease.

The PAG helped to spread information about the guideline to people living with sarcoidosis by running a series of webinars in different languages.

They also published a joint letter with healthcare professionals – Sarcoidosis – patient treatment priorities’ to highlight the findings of an international patient survey.

The PAG have supported a number of projects with the objective of increasing patient information and resources. These include:

• ELF sarcoidosis website
• Sarcoidosis factsheet
• Patient compass
• Sarcoidosis glossary
• Sarcoidosis in children
• Current clinical trials
• Surveys: COVID-19 and Steroid toxicity

The sarcoidosis patient charter outlines a joint strategy for the future improvement of patient care and quality of life for people with sarcoidosis.

The PAG hope that the charter’s call for action will raise awareness and widen understanding about the impact that this condition has on many people.

The PAG calls on patients, caregivers, healthcare professionals, policy makers and the general public to support the charter and to help disseminate it as widely as possible.

The charter is available in English, Dutch, French, German, Italian and Spanish.

Several of our PAG members are patient board members of ERN-LUNG, a network dedicated to promoting excellence in care and research for people affected by rare respiratory diseases.  A sarcoidosis core network was established in 2023 and is responsible for developing actions plans for their disease group.

They developed a sarcoidosis patient journey to represent the most important priorities and issues for people with sarcoidosis in diagnosis, treatment, follow-up care, education and communication. The sarcoidosis PAG hope it will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

ERN-LUNG is one of the 24 European Reference Networks approved and supported by the European Commission.

The annual ERS Congress can provide a number of opportunities for ELF PAGs. Sarcoidosis PAG members have played an important role in ensuring that patients have a platform and a voice at the event. Activities include:

• Patient experience videos in scientific sessions
• Poster session, Paris 2018
• PAG meetings held at ERS Congress in 2017 Milan; 2018 Paris, 2019 Madrid, 2023 Milan
• Talks and posters at ELF Patient Organisation Networking Day
• PAG has strong links with healthcare professionals in ERS and WASOG