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As European patient advocates, we are committed to contributing to the improvement of patient Only together will we bring about a path of change. Let us walk this way in unity. |
Information and practical instructions :
Download in pdf format
Rita, a sarcoidosis patient, talks about our Patient Advisory Group PAG
Free Massive Open Online Course (MOOC) 7 weeks of study, 1-3 hours/week.
http://www.formation-continue-unil-epfl.ch/formation/disease-screening-public-health/
Extrait de Sens & Santé n° 5 (année 2017), le magazine de la santé - art de vivre du Groupe Le Monde. www.sensetsante.fr
See the sarcoidosis Fact sheets in German, French, English and Italian
Factsheets: http://www.europeanlung.org/en/lung-disease-and-information/factsheets/english
It is possible to subscribe to a newsletter: http://www.europeanlung.org/en/news-and-events/newsletter/
European Respiratory Journal
December 1 2016 (Vol 48 Issue 6)
Podcast : http://erj.ersjournals.com/content/suppl/2016/11/24/48.6.E72.DC1
Abstract article : http://erj.ersjournals.com/content/48/6/1545
Abstract article: http://erj.ersjournals.com/content/48/6/1690
Editorial is free to view. ‘Closed’ articles are only accessible to ERS members. Then only abstracts can be read. To view the full articles you can become ERS member
International cooperation comparing health outcomes for sarcoidosis with 6 hospitals in the US and Europe
https://www.stopsarcoidosis.org/press-release-intl-collaboration/
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What is sarcoidosis ?
Download the complete information sheet
This rare disease is characterised by the development of small nodules in the body of inflammatory connective tissue called granulomas. Lungs, skin, muscles, joints, bones, eyes, liver, kidneys, heart and nervous system can be affected. Granulomas can leave scars, interfere with the functioning of injured organs and cause pain. In more than 90% of the cases, the lungs are affected.
The most common symptoms
- Dyspnoea and dry cough
- Sensation of oppression and pain in the thorax
- Flu symptoms, muscle and joint pain
- Skin rash on arms and legs
- Irritation of the eyes and visual disorders
- Swelling of the lymph nodes around the neck
- Generalized fatigue and limitation of physical capabilities