OBAVIJEST - EURORDIS RARE DISEASE EUROPE (EURORDIS RIJETKE BOLESTI EUROPE) IMA KREIRANE NOVE MREŽNE STRANICE

U nastavku možete pročitati novosti na net stranicama EURORDIS-a, krovne europske udruge koja okuplja rijetke bolesti koja ove godine slavi svoju dvadesetgodišbjicu, među kojima su, obzirom na pojavnost najčešće i hematološke bolesti.

Izvor: EURORDIS

Experience new eurordis.org!
Whatever your plans may be this summer, we hope that you are staying cool…just like our brand new website! Experience eurordis.org as never before – navigate with ease through our wide selection of rare disease resources and materials, explore the latest news and events, and discover all about our vision, mission, programmes and initiatives.
Explore now
 
EURORDIS celebrates its 25th anniversary
How time flies – EURORDIS is 25 years old! For the past 25 years, we have watched our community grow and become stronger than ever before. From reaching 1000 member organisations to hosting 15 Rare Disease Days and 11 European Conferences for Rare Diseases and Orphan Products, the impact of our work has continued to motivate us to strive for making rare diseases a global priority. Join us as we reflect on our past achievements and milestones!
 
Something to read
Fancy some summer reading? Meet our rare disease stars!
We’ve curated a wide selection of stories and articles below for you to choose from! As nominations open for the next EURORDIS Black Pearl Awards, hear from Danielle Drachmann, recipient of the 2022 Young Patient Advocate Award, and Claudia Crocione, recipient of the EURORDIS Volunteer Award 2020, on why you should take part to help shape a brighter future for families impacted by a rare disease.
 
Taking action for the rare disease community
Building a brighter future for the 30 million people living with a rare disease in Europe and the 300 million worldwide requires action from all stakeholders. Read about EURORDIS’ call for harmonised newborn screening programmes across Europe, and discover the conclusions drawn from ECRD 2022 in the form of an open letter to the European Commission!
 
Open Academy online courses
If you’re interested in some free online training from the EURORDIS Open Academy, we’ve got you covered! Explore the variety of e-courses that the Open Academy has to offer, with topics ranging from patient engagement, creating mobile videos, to information on the European and International research landscape. Happy learning!
Recommendations on the required capabilities for patient engagement
What are the competencies that your organisation should have to plan, evaluate, and implement meaningful patient engagement activities? In this new online course, learn how you can make patient engagement in medicines development easier for all. Enrol now!
 
Conflict of interest in patient engagement
What are the effects of different patient engagement activities? Enrol on the new Open Academy course on the conflict of interest in patient engagement and learn more about conflicts of interest, the impact they may have, and much more! Learn more.
 
Creating Great Mobile Video Course
Want to learn how to make professional and engaging videos with your smartphone  and improve filming skills to grow your audience? Sign up for the Open Academy Creating Great Mobile Video e-learning course now! Enrol now!
 
 

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