PRENOSIMO BILTEN OTVORENE AKADEMIJE EURORDIS RARE DISEASES EUROPE ZA LIPANJ 2022. GODINE

U lipnju ove godine održana je Ljetna škola EURORDIS-a, koju je polazilo 28 sudionika iz 18 zemalja. Nakon 20 pripremnih sati, polaznici su bili spremni za tjedan intenzivnog treninga s predavanjima o metodologiji, dizajnu i etici kliničkih istraživanja, o rijetkim bolestima i mnogočemu drugome. Ukoliko i vi želite postati zagovarač pacijenata, stručnjak za medicinska istraživanja i razvoj, možete se dogodine i sami uključiti u ljetnu školu. Za sada još nisu otvorene prijave. 
EURORDIS predstavlja i novi tečaj o sukobu interesa, radionicu za obuku adolescenata s rijetkim bolestima te novi vodič za pacijente sa smjernicama kliničke prakse.
Detaljnije pročitajte u nastavku.
Izvor: EURORDIS  RARE DISEASES EUROPE
 
 

The Open Academy June Newsletter welcomes the participants of the Summer School 2022 to the Open Academy Alumni! We also present a new online course on conflict of interest, a training workshop for adolescents with rare diseases and a new guide on patient involvement in clinical practice guidelines.

 
28 participants from 18 countries completed the EURORDIS Summer School on Medicines Research & Development that took place online on the 6-10 of June. After completing 20h of pre-training, they were more than ready for this intensive training week with sessions about: methodology, design and ethics of clinical trials, therapeutic development in rare diseases, engaging with the European Medicines Agency, Health Technology Assessment, pharmacovigilance and much more!
 
Big changes are coming for next year’s Summer School. Stay tuned to find out more soon!
 
Become an expert in medicines research and development!
 
NEW E-LEARNING COURSE ON CONFLICT OF INTEREST IN PATIENT ENGAGEMENT
If you are a patient advocate interested in engaging with the industry, regulatory agencies, payers, national bodies, etc., and you want to help avoid or minimise conflict of interest this online course is for you. This course has been developed by experts and is based on one of the main outcomes of the IMI-funded multi-stakeholder consortium PARADIGM.
Start straight away and learn at your own pace!
 
MORE CAPACITY BUILDING OPPORTUNITIES FOR PATIENT ADVOCATES
In-person workshop | Paediatric expert patients training

This workshop is targeted at adolescents aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children’s rights. It is organised by TEDDY (European Network of Excellence for Paediatric Research) with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD).

Where and when: July 12th -15th at the University of Lyon (France)
Deadline to apply: July 1st!
 
 
New guide on patient involvement in clinical practice guidelines & clinical decision support tools

If you are interested in knowing more about how Clinical Practice Guidelines and Clinical Decision Support Tools are developed and how the patient voice can be successfully incorporated, don’t miss this practical guide developed by EURORDIS, the European Lung Foundation and the European Patient Advocacy Group (ePAG) Working Group.
 
 
 
Pst, pst! Remember that the call for new ePAG advocates is still open (until 31st July). Thinking of applying? Send an email to lenja.wiehe@eurordis.org to get more information.
 
Do you know a friend who might be interested in our online courses? Forward this newsletter to them! Do you have links, online courses, or webinars that would be interesting for the Open Academy alumni, a success story to share with us, a future training request or just want to say hi? Email us at openacademy@eurordis.org

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