Time goes by with turbo speed. It's already more than half decade ago since Sarah collected also my most important patient issues (2015) for to feed them into the inital sarcoidosis guideline proposal development.
In the meantime we were not just waiting for the guideline to appear, we did also some common activities and exercises - Chris gave a pretty nice summary an these activities some days ago:
Concise overview ELF SPAG 2015 – 2020.
Some of these (resulting in presentations and publications) were required to emphasize common patient needs to the guideline discussion, some of them were compiling messages to the public for the ELF Patient Priorities website.

This Corona year made our lifes different - for me with drawbacks, but also with opportunities (home office was a huge easement for me). This year also brought some more or less highlighting events from the field of our original working order together with more and more exciting publications on mTOR and sarcoidosis.

2020-02: Comprehensive Care for Patients with Sarcoidosis

The year 2020 brought some special issues in journals - like the Special Issue Management of Sarcoidosis: Challenges and Solutions in the Journal of Clinical Medicine. In the Article Comprehensive Care for Patients with Sarcoidosis guidance to clinicians during the first work-up and follow-up of patients is outlined. A comprehensive, multidisciplinary approach is essential to treat patients and to relieve symptoms and optimize QoL.

2020-03: ATS Guideline on Sarcoidosis

Since last March, the ATS clinical practice guideline on Diagnosis and Detection of Sarcoidosis is published.
This guideline covers the first part of the diagnosis, follow-up, and treatment areas of our initial work order. I'm very surprised that there have been only a few remarks in press on that. And - as far as I could find with aunt Google - there were no discussions from patient organisations at all.
Of course, the numerated recommendations are not really new.
But: Don't we have any comments how and where this diagnostic procedures should be performed?
And: Does this guidline support solutions for our open needs collected 5 years ago or are these still open needs?
And: Does this basic set of recommended procedures not harm patients with a more complicated disease presentation?
Don't get me wrong: I don't want this guideline translated into any language, because the national medical organizations will do their own interpretation (if they find it's worth to do).

2020-04: When the Game Changes

End of April, When the Game Changes the Guidance to Adjust Sarcoidosis Management During the Coronavirus Disease 2019 Pandemic was published as worldwide statement of our dedicated doctors on sarcoidosis treatment. Recommendations like "The clinician should establish facile methods of communication with their patients, including rapid consultation systems and other appropriate safeguards." are worth to be established and maintained even after Corona.

2020-08: ERS Congress

I found the majority of sarcoidosis discussions on pulmonary fibrosis and life expectance. Of course, it was a pneumonologists congress. But maybe also because of some gap, because the ERS guideline on the treatment of sarcoidosis did not come as wished. And because of the fact, that an antifibrotic drug was approved for further diseases - like fibrotic sarcoidosis in the lung.
I have some further notes about the congress here.

2020-09: FSR Summit I

Some great talks also interesting for people from an other continent like me. It was a pleasure to listen to Arthur Yee's introduction Sarcoidosis 101 and to hear especially in the Q&A section that he really sees sarcoidosis as systemic disease.
And I was impressed how well structured Ennis James presented his Sarcoidosis Disease Monitoring numbering many views and steps to do which usually are only mentioned from patient advocates side. Having this lecture on Youtube would be great for our community.

2020-11: New WASOG Centers of Excellence published

Zürich, Barcelona, Forli, Leuven, London, Rochester (see WASOG page)
(But what about WASOG clinics? Does anyone know some news?)
Rem.: There is a press release (to engage in sarcoidosis) also from Heidelberg/Michael Kreuter.

2020-11: FSR Summit II

FSR's second summit - my memories are only diffuse. It was enlightening to hear people talk which I did know so far only from their papers. And it underscored, that knowledge and data especially in areas like neuro sarcoidosis are realy rare.
In the Q&A section Nadera Sweiss was asked about the greatest myth on sarcoidosis - and she will think about. :-)

2020-12: BTS Clinical Statement on pulmonary sarcoidosis

A year after opening the draft for public consultation the BTS Clinical Statement on pulmonary sarcoidosis was published.
It is a great, compact, comprehensive statement which will be my reference for the next time.
Nice end of the year.
What I'm missing most concerning lung is scan/care for reflux and function test of the diaphragm as part of the PFT (ex-/inspiration pressure).
On the other hand: it also covers topics like in which setting to care for patients - and this is great.

2020-12: Paper Risk and outcome of COVID-19 infection ...

The paper Risk and outcome of COVID-19 infection in sarcoidosis patients: results of a self-reporting questionnaire with contribution from Italy / Netherlands / Spain / US has been published in the WASOG Journal.

2020-12: CLEAR Study

CLEAR Results are available: no significant differences to placebo.

2020-12: mTOR rocks (or alike)

FSR fosters research on mTOR in the US and also here in Vienna. Results indicate promising progress (e.g. Crouser et al, Löffler et al), but our mTOR study in Vienna will take another year (recruiting was closed at the end of last year, treatment/observation span for particiants is one year).
Is there anything we can do/request together from our medical societies to facilitate/speed up future studies?