SarcoidosisUK has been working in Paris on behalf of sarcoidosis patients at the European Respiratory Society (ERS) Congress 2018
“It has been a fully packed programme over 4 days, meeting sarcoidosis patients, patient organisations, clinicians and researchers from all over Europe and the world. It feels great to be working towards a better future for sarcoidosis patients with so many like-minded people who share the same goals as SarcoidosisUK.”
Jack Richardson, Executive Officer, SarcoidosisUK
Highlights at Congress have included:
1) Presenting the SarcoidosisUK Nurse Helpline as an example of an ‘Innovative Collaboration in Patient Education‘ to over 100 delegates at the Patient Organisation Networking Day (photo, below). Following the presentation, many organisations praised the project and requested further information to help them start similar helplines for their patients.
2) Meeting with top sarcoidosis specialists Dr Surinder Birring and Dr Bob Baughman to discuss the next steps for the King’s Sarcoidosis Questionnaire online tool. The aim is to get this measure as widely used as possible, including in the USA. Stay tuned for further updates soon.
3) An initial meeting with an international group of sarcoidosis patients and sarcoidosis patient organisations discussing a new Patient Priorities website focused on sarcoidosis (photo, below). This website will be organised by the European Lung Foundation (ELF) and will contain important information for sarcoidosis patients across Europe in multiple languages. You can see past examples of Patient Priorities website for other conditions here. If you have ideas for what should be included in the project please get in touch.
4) Updates from ongoing sarcoidosis taskforces which are writing international clinical guidelines. These guidelines will be important in informing future NHS guidelines for ILD and sarcoidosis. There is currently a ERS Sarcoidosis Treatment Guideline (to which Jack is contributing as part of the Patient Advisory Board) due for publication in Spring 2019. There is a separate American Thoracic Society Sarcoidosis Diagnosis Guideline which is due for publication later in 2019.
5) Finally, Jack is a new member of the European Lung Foundation Patient Advisory Committee and attended his first committee meeting in Paris. Items on the agenda included publishing clinical trails results, WHO air quality commitments and a call for patient input to the ERS RESPIRE Fellowship programme. We will circulate more information on this opportunity to SarcoidosisUK Patient Council Members.
SarcoidosisUK would like to thank the ERS for the bursary to attend congress.