We have recently launched a new patient priorities project to develop patient-led guidance on what matters most to people affected by sarcoidosis.
Sarcoidosis is a condition which can affect different parts of the body including the lungs, brain, skin, eyes and heart. It is not a common condition and its causes are unknown.
We are working with our well-established sarcoidosis patient advisory group on this project. This group is made up of individuals and members of patient organisations in Austria, Italy, Germany, Netherlands, Serbia, Switzerland, UK and USA as well as individual experts. Members of ERN-Lung will also be involved.
We will work together to produce up-to-date information on sarcoidosis for a website, and to create a joint statement and checklist for patients about best treatment. The joint statement will be based on the upcoming ERS Sarcoidosis Treatment Guideline amongst other resources.
The group recently had a letter published in ERJ Open Research highlighting the results from an international survey of individual with sarcoidosis which demonstrated that quality of life and functionality are their most important treatment priorities. The letter also highlights other priorities including the establishment of sarcoidosis specialist centres in every country and for clinicians to work in a multidisciplinary way to ensure a holistic approach to treatment and care.
The sarcoidosis patient priorities website will be launched in February 2020.
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