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To mark the occasion of
#RareDiseaseDay 2020 EURORDIS is organising ‘Reframe Rare’ a policy event@Europarl_EN on 18 February co-hosted by MEPs@tfajon@Kympouropoulos &@Frederiqueries. http://ow.ly/3PqG50yepNH pic.twitter.com/oaPFFBuZjK
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Final call to submit a poster abstract for
#ECRD2020 by 10 February! Don't miss the chance to showcase your research at an event bringing together 800+ participants from 50+ countries to shape future#raredisease policies. https://www.rare-diseases.eu/posters/ pic.twitter.com/fZVtrqHwB6
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Have you voted for your favourite photo to win the EURORDIS Photo Award? The winning photo will be announced during the
#EURORDISAwards2020 ceremony on 18 February. Vote now at https://blackpearl.eurordis.org/photo-award/ https://twitter.com/eurordis/status/1222101489335685120 …
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EURORDIS proudly supports the
#EUCancerPlan, inspiring speeches from@vonderleyen and@SKyriakidesEU calling for a Europe that strives to address the needs of people living cancer, including rare cancers.pic.twitter.com/5gzOX0WIxe
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Results from a recent
#RareBarometer survey show that people living with a rare disease are willing to share their health data to foster research or to improve their healthcare. Read more: http://ow.ly/riPc50ybBeV pic.twitter.com/HFmvE16mxv
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Only one week left to submit your poster abstract for
#ECRD2020 for the chance to have your work featured at the largest, patient-led rare disease event. Find out more about the 8 poster themes: https://www.rare-diseases.eu/ pic.twitter.com/WVjWseK4dH
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We are honoured to announce
#AudreyHepburn as posthumous Honorary Patron of EURORDIS. The late Hollywood actress and humanitarian passed away from the rare cancer pseudomyxoma peritonei, which affects only one in a million people.@intimateaudrey http://ow.ly/uEZE50ya32x pic.twitter.com/t1EKOQW7LY
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Check out a podcast series by
@whitworth_group about rare diseases, discussing topics such as genome editing and health care. Listen to the latest episodes:https://rare-d.com/podcasts/Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Read more about a case study suggesting we need to reconsider current marketing authorisation models and approaches for cancer medicines in Europe:https://link.springer.com/article/10.1007/s40258-019-00527-x …
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Jana Popova is the recipient of the Young Patient Advocate Award 2020. Read more about her outstanding achievements: https://blackpearl.eurordis.org/awardees/ The
#EURORDISAwards2020 ceremony will take place on 18 February in Brussels, register to attend: https://blackpearl.eurordis.org/tickets-corporate-partners/ …pic.twitter.com/XuTXvEPCsF
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New graphic report showing the results & recommendations from the first international survey on rare disease patient perspectives on
#datasharing and data protection carried out by#RareBarometer. Read more: http://ow.ly/JzrK50y8LR0 pic.twitter.com/OYUpOlx5ne
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Register for
#REACTCongress &@irdirc conference on cutting-edge research & policies related to rare disease research 11-14 March, Berlin. https://react-congress.org@BLACKSWANFound@react_communityHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February! Submit your vote at https://blackpearl.eurordis.org/photo-award/ The winning photo will be announced during the EURORDIS Black Pearl Awards ceremony on 18 February.
#EURORDISAwards2020pic.twitter.com/h3i8riu3XT
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EURORDIS, together with its members, is proud to represent the patient voice at the
@EMA_News in several committees and working parties that help bring innovative medicines to the rare disease community.https://twitter.com/EMA_News/status/1221826164349657093 …
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@Metab_ERN has published a study on the unmet needs of people living with rare metabolic diseases in Europe accessing EMA-approved orphan medicinal products. We encourage all ERNs to conduct similar studies in their disease area and share the results https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945588/ …pic.twitter.com/1oux5gYQk8
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5 weeks to go until
#RareDiseaseDay 2020 on 29 February. Check out this press release for the latest information on this year’s campaign. https://download2.eurordis.org/documents/pdf/PressRelease_RareDiseaseDay2020.pdf …pic.twitter.com/U49H6cuMzj
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Are you conducting research on rare diseases or public health projects? Don't miss the chance to showcase your work at
#ECRD2020, submit your poster abstract by 10 February: https://www.rare-diseases.eu/posters/ pic.twitter.com/8mUuycF5PZ
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We want to hear from you! Take the
#RareBarometer H-CARE Survey available in 23 languages and have your say on the healthcare you receive for your rare disease: http://tiny.cc/h-care pic.twitter.com/U56EiTG1tgHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Thank you
@SKyriakidesEU for a fruitful discussion held in the context of#EUCancerPlan on how to address the needs of#EU adults & children affected by 1 of the 200 rare cancers every year. We look forward to contributing patients’ insights & co-designing concrete solutionshttps://twitter.com/SKyriakidesEU/status/1219292121716396033 …
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Today EURORDIS is meeting with new Health Commissioner
@SKyriakidesEU to convey our key recommendations to address the needs of rare cancers within Europe’s Beating Cancer Plan. We are proud to advocate for people with rare cancers on#AudreyHepburn anniversary.pic.twitter.com/Z5bPw3lPTl
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